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Kickin' It for Kasey How One High School Student Council Turned School Spirit Into Purpose text on blue background

Fri, 08 May 2026 02:20:25 GMT

A Community Coming Together

Every year, the ARHS Student Council hosts a spring fundraiser benefiting a non-profit, but in recent years, participation has declined. That began to change at the start of this school year, when advisor Mrs. Braun mentioned that her 25-year reunion for Algonquin was coming up, and for the first time, the Student Council heard about Alyssa Zachmann and her daughter, Kasey.

The idea started small. But as the winter months arrived and the students learned more about Kasey — her battle with medulloblastoma, her joyful personality, her love of music — the motivation to act grew into something unstoppable. Service Committee co-leads Ciara and Aanya began shaping a vision: a community-wide carnival event with activities inspired by Kasey herself.

"At the start of the year, it was solely an idea," Aanya shared, "but when winter came, the more we learned about Kasey, the more we were inspired to do something. We learned about Kasey's favorite activities and tried to incorporate them into the event."

A key turning point came during a Student Council meeting when the group watched a video interview Kasey had given. Seeing her — vibrant, funny, full of life — gave the students something that no statistic could: a reason. "Seeing such a young girl who was full of vibrant life and laughter gave us a reason to organize an event and honor her," Aanya reflected. And learning about everything Alyssa had contributed to Algonquin as a student gave the council an added sense of purpose — a chance to give back to one of their own.

May is Brain Cancer Awareness Month — a time to honor the children and families fighting and to celebrate the communities rallying behind them. It feels fitting, then, to share a story that moved us deeply last month: on April 12, Algonquin Regional High School's field came alive with music, laughter, and the kind of energy that reminds you what community is really made of. Students and community members gathered for Kickin' It for Kasey — a carnival and fundraiser organized by the ARHS Student Council in honor of LBF Hero Kasey Zachmann , who passed away in August 2025 after a courageous four-year battle with an aggressive form of medulloblastoma.

Kasey's mother, Alyssa Zachmann, is an Algonquin alum — and when Student Council members learned about Kasey's story this school year, they were moved to do something meaningful. What followed was months of planning, learning, and organizing that culminated in a beautiful spring afternoon dedicated entirely to honoring a little girl whose light, joy, and determination continue to inspire everyone who knew her.

All proceeds from the event benefit the Kasey Zachmann Fund for Medulloblastoma Research through the Lilabean Foundation — a fund dedicated to accelerating scientific discovery for children facing this devastating disease.

The Inspiration Behind the Event

A Day Built Around Kasey

The weather cooperated beautifully, and the outdoor setting brought the event to life. On the main field, two soccer games anchored the afternoon — first, a youth game featuring Northborough and Southborough recreational teams, followed by a spirited mixed game between Algonquin's own girls' and boys' varsity squads.

Around the field, carnival booths run by the Social Studies Honor Society, Art Honor Society, and Student Council offered a treasure hunt, face painting, and bracelet making. Mini golf and lawn games drew huge crowds, food trucks lined the parking lot, and rainbow balloons brightened every corner of the venue.

Woven through it all was Kasey's own playlist — the music she listened to during chemotherapy. "It reflected parts of her personality and who she was," Aanya said. "I felt like the event was much more meaningful with that touch."

The Moments That Mattered Most

When asked about her favorite part of the day, Ciara didn't hesitate: it was the chance to speak directly with Kasey's family. "It put a face to the people we wanted to benefit," she said, "and seeing their gratitude made the entire process worth it."

That connection — between the students who had spent months organizing and the family whose daughter inspired it all — is at the heart of what makes events like Kickin' It for Kasey so powerful. It's easy to fundraise for a cause. It's something different entirely to truly know the person behind it.

For the ARHS Student Council, learning about Kasey transformed an annual tradition from a routine fundraiser into something personal. Into something urgent. Brain tumors are the leading cause of cancer-related death in children in the United States, yet pediatric brain cancer receives only a fraction of federal cancer research funding — less than 4% of the National Cancer Institute's budget goes to pediatric cancer research, and only 8% of that goes toward pediatric brain tumors. Private fundraising efforts like Kickin' It for Kasey aren't supplemental. They're essential.

The students understood this. And that understanding turned their spring fundraiser into something Algonquin will remember for years to come.

A Message from Kasey's Family

Kasey's mother, Alyssa Zachmann — a proud Algonquin alumna — was present for the event, and her words say everything:

"Our family was honored that ARHS chose to honor Kasey and raise money for the Lilabean Foundation. We are inspired by the dedication of the students and so thankful for the hard work they put in to creating a fun day that Kasey would have loved. Welcome to Team KVZ, ARHS!"

Kasey Zachmann passed away on August 16, 2025, after four years of fighting medulloblastoma with extraordinary strength and grace. She endured 10 surgeries, 45 proton radiation treatments, multiple chemotherapy cycles, and two clinical trials. Through it all, her love of music, her kindness, and her determination never dimmed.

The Kasey Zachmann Fund for Medulloblastoma Research was established in her memory to carry forward research to help children like Kasey. Current LBF-funded projects in her honor include PNOC044 — the first-ever clinical trial testing hormone therapy for relapsed medulloblastoma — and a translational imaging initiative through the Children's Brain Tumor Network that will make medulloblastoma data more accessible to researchers worldwide.

Welcome to Team KVZ, ARHS

Alyssa Zachmann's words — "Welcome to Team KVZ, ARHS" — are more than a thank you. They're an invitation. And the Algonquin Regional High School Student Council accepted it wholeheartedly.

What the students at Algonquin demonstrated last month is something LBF sees in our community every year: that the fight against pediatric brain cancer doesn't belong to researchers and doctors alone. It belongs to every person willing to show up, to learn, to care, and to act. It belongs to high schoolers who stay after class to plan a carnival andwho study a little girl's playlist so that her music can fill a field full of people who never met her but are honoring her all the same. As we mark Brain Cancer Awareness Month this May, their example is a reminder of what it looks like to truly show up for a cause.

To the ARHS Student Council, Mrs. Braun, and everyone who attended, volunteered, donated, and played mini golf in Kasey's name: thank you. You've joined a community that fights 365 days a year for children like Kasey — and your commitment to this cause is felt deeply.

If you'd like to support the Kasey Zachmann Fund for Medulloblastoma Research, you can make a gift at lilabeanfoundation.com/kasey-zachmann . Together, we move closer to the day no family has to hear the words "your child has brain cancer."

The Race That Matters Most: One Teacher, 50 States, and a Student She’ll Never Forget

Fri, 03 Apr 2026 17:19:53 GMT

When Justine Carr laces up her running shoes and crosses the finish line of the Bend Half Marathon this spring, she'll be carrying more than miles in her legs. She'll be carrying the memory of a little girl who danced, told jokes, asked questions, and showed up every single day with a smile that could fill a room.

Cameron Corno was Justine's kindergarten student and one of the bravest people Justine has ever known. Cameron passed away on June 6, 2025, after a five-year battle with ependymoma, an aggressive pediatric brain cancer. She was six years old. But in the years since Justine first set her goal to run a race in all 50 states, Cameron's spirit has quietly shaped that mission into something far greater than a personal achievement.

Bend, Oregon, will be state #47. And Justine is running it — as she has before — for Cam.

A Kindergartner Like No Other

Ask Justine what Cameron was like, and she doesn't reach for the story of a sick child. She reaches for the story of a kid.

“She loved to dance, giggle, and read stories. She loved playing with her friends and telling you about her day. She asked questions and was excited to learn new things. She loved spirit days and telling jokes. She was kind to friends who were having a hard day and loved to be a leader. She really loved being a Carderock Cub!”

In her years as a kindergarten teacher, Justine has welcomed hundreds of students. She describes Cameron's class — her 18th kindergarten class — as the most empathetic, understanding, and caring group she has ever had the privilege to teach. Many of the children had grown up alongside Cameron and loved her simply as their friend Cam.

“They helped Cameron when she needed it, without ever making her feel differently for needing it. They never asked why she didn’t have to do something they did or got to do something they didn’t. While a couple might have been just a little jealous that she got to meet the CAPS, she was just their friend Cam. Her impact on them was undeniable. I know that is something they will carry with them always!”

On days when Cameron needed to rest instead of going to recess, the two would stay inside together — just talking, telling stories, reading books.

“This special time will always stay with me,” she says.

The Goal That Started with a Girls on the Run Season

Justine's 50-state running goal didn't start with a bucket list. It started in a circle of young girls, with a clipboard and a coaching whistle.

Justine has been a Girls on the Run coach for 25 seasons — a program that teaches young girls to build confidence, resilience, and community through running. Years ago, she was leading a goal-setting activity at the start of a new season. After a couple of seasons sharing basically the same personal goals, she decided it was time to dream bigger.

“I decided to make a couple of big goals that would go beyond the season,” she explains. “The first was to run a race in every state, and the second was to keep coaching for Girls on the Run at least until I reach that first goal. I thought it would be a good way to show my students that some things are really tough, but we can tackle anything with persistence and heart.”

It was a lesson she was determined to model, not just teach. And somewhere along the way, that goal of 50 races through 50 states became woven together with something — and someone — much more meaningful.

Running for Something Bigger

This spring's Bend Half Marathon will be Justine's second race dedicated to raising funds for the Lilabean Foundation in Cameron's honor . When she crosses that finish line in Oregon, she'll be just three states away from completing a decade-long dream. The excitement is real — but so is the weight of why it matters.

“Honestly, I never feel like I am doing enough!” she says. “I love getting ready for a race and planning my visit to a new place, but trying to raise money for an organization like the Lilabean Foundation that does so many amazing things makes it all that much more meaningful. When I think of Cameron and all of the other LBF Heroes, I can’t help but be motivated to continue and do whatever I can to help raise funds and awareness.”

And the community has answered. When Justine runs wearing her Cam's Crew shirt, strangers along the course don't just cheer for her — they cheer for Cameron.

“When I am running a race, and someone sees my shirt and yells out ‘way to go Cam’s Crew’ I get a burst of energy and love!”

That’s what Cameron does. She brings people together — even people who never met her, cheering her name in the streets of cities she never visited.

The Shoes, the Playlist, and the Pink Sunrise

Distance running is an exercise in solitude. Miles of pavement, just your body and your thoughts. For Justine, who laughs and calls herself "very slow," those long stretches of training time have become something sacred.

She listens to Cameron's playlist. She thinks of her when she runs beneath a beautiful sunrise. And during races, she carries Cameron's smile and laugh with her as both fuel and joy.

But perhaps nothing captures the depth of that bond more than a pair of running shoes.

When Justine first ran for Cameron to raise money for the Lilabean Foundation, she got a special pair of running shoes — ones with plenty of pink on them. She asked Cameron to sign them. Cameron did, adding a little heart. She laughed at the request, probably thinking it was a funny thing for her teacher to ask. But those shoes now hold a place of honor in Justine's collection. She wears them whenever she needs extra strength.

"That’s what carrying Cameron’s memory does,” Justine says simply. It gives strength.

Cameron's story has also shifted the way Justine thinks about fundraising itself. Asking people for money can feel uncomfortable. But when the ask is rooted in someone so real, so vivid, so loved — it becomes something different entirely.

“Cameron touched so many people with her strength, bravery, and smile,” Justine reflects. “It can be hard to ask people for money, but when it’s for something and someone so important, it doesn’t feel so hard anymore. I am so grateful to all the friends, family, teachers, Cam’s Crew, and total strangers who have given in hope of making a difference for children bravely fighting pediatric brain cancers.”

Turn Your Passion Into a Fundraiser

Justine's story is a powerful reminder that fundraising doesn't require a gala or a corporate sponsor. It starts with something you already love — a race, a hobby, an annual tradition — and a cause you believe in.

When asked what she'd say to someone thinking about doing the same, Justine doesn't hesitate:

“Do it! Why not? Taking something, you are passionate about, like a race or hobby, and putting it to a great cause can only make it more meaningful. It is a great way to keep important people close to our hearts and shows the irreplaceable value of organizations like the Lilabean Foundation. Nothing we do will probably ever be as hard as the things Cameron and the other LBF Heroes go through. Dedicating our energy to fundraising for them will hopefully eventually result in big advancements in pediatric brain cancer research and treatments.”

The Lilabean Foundation makes it easy to create your own fundraising page and dedicate it to an LBF Hero or in memory of someone you love. Whether you’re running a marathon, hosting a birthday fundraiser, or organizing a community event, you can turn that moment into meaningful impact for children battling brain cancer.

Ready to start your own fundraiser? Visit the LBF Community Fundraising page to create your personalized fundraising page and join the growing community of supporters who are turning their passions into purpose.

CamStrong Forever

When asked what she would want Cameron to know if she could see all of this — the miles, the medals, the fundraising pages, the strangers cheering in the streets — Justine's answer is clear and immediate.

“I would want her to know that we all still carry her with us. That Cam’s Crew is enormous, and we think about her and hold her in our hearts all the time. I would want her to know that we are doing our best to raise funding to help those who come after her. And that we are doing our best to stay #CAMstrong forever!”

You can support Justine’s fundraising efforts by donating here . All donations will be directed toward the Cameron Corno Fund for Ependymoma Research.

The Women Who Carry Us: Honoring the Strength Behind Every Child's Fight

Tue, 31 Mar 2026 20:15:55 GMT

This Women's History Month, the Lilabean Foundation honors the extraordinary women who surround children fighting brain cancer — from researchers driving collaboration to friends who simply refuse to let go.

Every March, the world pauses to honor the women who have shaped history — the pioneers, the trailblazers, the voices that refused to be silenced. But some of the most extraordinary women doing the most extraordinary work don't make headlines. They make meals. They make calls. They make sure that a mother caring for her sick child has someone to talk to.

Behind every child fighting for their life is a remarkable network of women — researchers who build bridges between science and hope, and friends who simply refuse to let go. Their work looks different. Their titles are different. But the thread connecting them is the same: an unwillingness to accept the status quo, and an insistence on showing up.

This Women's History Month, the Lilabean Foundation is honored to highlight two of those women. Gerri Trooskin, Director of Partnerships at the Children's Brain Tumor Network, who works every day to ensure that no child's experience is lost and that the science of healing moves faster because people choose to collaborate rather than compete. And Alexandra Byrnes, LBF Board Member and close friend of Stewi Corno, mother to LBF Hero Cameron Corno, who knows firsthand what it means to show up when the stakes could not be higher.

Together, their stories paint a portrait of what it looks like when women lead with purpose.

Beyond the Bedside: Driving Research Forward

The fight against pediatric brain cancer extends past the hospital room. It continues in conference rooms and on research platforms, in emails and phone calls that connect scientists to patients, and in the steady, determined work of people like Gerri Trooskin.

As Director of Partnerships at the Children’s Brain Tumor Network (CBTN), Gerri sits at the intersection of science, philanthropy, and human experience, working each day to ensure that discovery moves forward and that no family’s journey is forgotten.

Can you share your role at CBTN and how it supports children with brain tumors?

“In my role, I focus on building philanthropic partnerships and connecting patient-founded organizations with the researchers and clinicians who are driving the work forward,” Gerri explains. “A big part of that work is partnering closely with patient parents who have started foundations, often in response to their child’s diagnosis or loss. CBTN exists to ensure that no child’s experience is lost. Every sample, every data point, and every story can contribute to discovery. My role is to help connect the people, funding, and priorities that make that possible, so we are learning collectively rather than in silos.”

Translating the complexity of science into something families can feel and understand is, for Gerri, as important as the research itself. “The work is complex, but the impact is deeply personal. Families want to understand how progress is being made and how their support is making a difference, and it is important that we can clearly connect what is happening in the lab to real outcomes for children.”

Collaboration is at the heart of your work — do you think there are qualities often associated with women that strengthen that approach?

Gerri answers this question with care. “I think some of the qualities often associated with women — like empathy, active listening, and a strong sense of purpose — can show up in really meaningful ways in this work. At the same time, I have seen those qualities in many people across this field, and they are essential to collaboration more broadly.”

What she notices most is not gender itself, but a particular kind of leadership. “I work closely with patient parents who have stepped into this space because of their child’s diagnosis. More often than not, these foundations are led by moms. They have experienced firsthand how limited the options can be, and they are not willing to accept that as the status quo. What stands out is how they lead. There is a real combination of compassion and determination. They bring people together, ask thoughtful questions, and keep the focus on what matters most. That perspective strengthens collaboration and helps move things forward meaningfully.”

Can you share a moment where collaboration — perhaps led or shaped by women — made a meaningful difference?

“There is not just one moment,” Gerri says. “It is something I see consistently.”

“Some of the most powerful examples come from patient parents, often mothers, who have turned their experience into action. I have seen them walk into rooms full of scientists and clinicians and shift the conversation. They ask hard questions, push for clarity, and make sure the work stays connected to patients. They bring a level of focus and urgency that can change how decisions are made. In many cases, they have helped align groups that might not have otherwise worked together and pushed efforts forward in a more coordinated way. Some of the most impressive people I have met in this role are parents on a mission.”

What gives you hope when you think about the growing number of women contributing to research and innovation in this space?

“What stands out to me right now is the momentum,” she shares. “I’m seeing more women involved across every part of this work and increasingly helping shape how it moves forward. There’s a thoughtfulness and sense of responsibility that comes through in how many women approach this space, along with a clear focus on impact. It feels like meaningful progress — and that’s what gives me hope.”

The Power of Community

There is a kind of support that no clinical training can teach, and no research grant can fund. It lives in the text message sent at midnight. In the friend who drives two hours just to sit on the couch and say nothing. In the woman who doesn’t wait to be asked, she just shows up.

Alexandra Byrnes knows this kind of support intimately. As a close friend of Stewi Corno — mother to LBF Hero Cameron Corno, who fought an extraordinary five-year battle with ependymoma before passing away in June 2025 — Alexandra has witnessed firsthand what friendship looks like in the face of unimaginable hardship.

What role do friendships between women play when a family is navigating a child’s diagnosis?

“Friendships and support are the biggest gifts that you can give someone navigating this journey,” Alexandra says. “Many people in life have never experienced supporting a friend in this situation — until you do — and often, everyone is learning together on how to best support and be there for the family.”

She speaks to the particular isolation that marks this experience. “Going through a cancer journey with your child is one of the most isolating experiences. There must be many times when a parent could be physically surrounded by many people, yet at the same time, feel completely alone.”

Her message to anyone on the periphery of a family in crisis is unequivocal: “Do not forget your friends. Do not forget them at the onset of the diagnosis or throughout the journey and for the rest of their lives — no matter the outcome. As a friend, we will not understand everything, and we must be comfortable with uncertainty and discomfort. We will not understand all of the medical terms, why this is happening, or how to best support our friend. But the key is to keep showing up. Do not show up the same way every time. Show up in different ways and no matter what, be there to listen.”

In your experience, how do women support one another through both the practical and emotional realities of this journey?

“Women are great at operations and logistics,” Alexandra says. “I have had the great gift of watching how my friend’s neighborhood community mastered the logistics game — from Meal Trains, picking up medicine at specialty pharmacies, planning cheer-up parties, customized shirts, and so on and so forth.”

The emotional dimension, she says, is where things get more nuanced. “There is nothing quite like a mother’s love. Every single mother can so easily put herself in the other mother’s shoes and feel her heart drop when she thinks about a child battling a cancer journey. Sometimes this emotional reality can be crippling — where some do not know what to do or how to process it on their own, let alone show up for their friend. This is when I think it’s important for women to band together. Have a network of women who are all connected to the family, work together to process your own emotions, and lean on each other so that you have the strength to show up as your best and strongest self.”

The women who get this right, she says, don’t assume — they ask. “Sometimes they just need a hug — hold them, let them cry in your arms. Sometimes they want to talk and think about nothing related to the journey and pretend to feel normal for a moment. Sometimes all they want to do is talk about their child — whether they are here or not. Don’t assume they don’t want to attend an event. Let them have the option and make the decision themselves. Assisting a mom through this journey requires all of us to continue to work on our own Emotional Intelligence.”

She closes with a charge that is both tender and urgent: “Get on the flight, get in your car, walk down the street — don’t stop showing up for your friend. If their child does not survive their battle with cancer, the importance of this is even greater. Your friend’s entire universe has shifted. All they know now is a life where they are constantly fighting for their child. Without that fight, we must fight for our friend — to bring that smile back to their face, to help them have a space to remember their child, and to protect them from the deep darkness of loss. Show up.”

A Village, Not a Footnote

Gerri and Alexandra operate in very different worlds — one defined by data partnerships and research consortiums, the other by the quiet, fierce loyalty of friendship. And yet, through both of their stories, the same thread runs: the willingness to be present, to carry something for someone else, and to keep showing up even when the path is painful.

This Women’s History Month, the Lilabean Foundation celebrates these women — and the thousands like them who are doing this work every day without recognition. They are researchers and nurses, board members and best friends, advocates and arms to cry in. They are the reason families feel less alone. They are the reason science keeps moving forward. They are the reason hope is still possible.

If their stories have moved you, consider joining the fight. Donate, share, or get involved — and the next time someone you know is walking this road, remember what Alexandra said, “sometimes, all you have to do is show up.”

A New National Effort to Break Down Data Barriers in Pediatric Brain Cancer: What PCX Means for Kids and Families

Thu, 29 Jan 2026 21:22:19 GMT

For families facing a pediatric brain tumor diagnosis, one thing quickly becomes clear: care, information, and expertise are often spread across many hospitals and systems. While clinicians and researchers work tirelessly, the data that could help connect the dots is often fragmented, sealed in different formats, institutions, and silos. A newly announced national initiative, PCX (Pediatric Care eXpansion), aims to change that.

Backed by up to $50 million in milestone-based funding from the Advanced Research Projects Agency for Health (ARPA-H), PCX is designed to dramatically improve how pediatric health data is shared, starting with pediatric brain tumors.

Why This Matters to Our Community

At the Lilabean Foundation, we believe progress happens when science and community come together. PCX represents a meaningful step toward a future where no child’s story is broken by fragmented data and where every child benefits from what we learn together.

Why Data Sharing Matters So Much

Today, a child’s clinical information, like doctor notes, scans, and treatment details, often lives separately from research data, and research data has not historically supported clinical data. Moving information from one place to another has historically required people to manually copy and paste data… a slow, expensive process that makes it nearly impossible to scale nationally.

Even when hospitals agree to share data, it can be cumbersome to access and integrate. When care happens across multiple institutions, something that is common in pediatric brain cancer, the patient's clinical data becomes fragmented, making it challenging for researchers to see the full picture of a child's clinical journey.

PCX is designed to address this challenge by creating a space between clinical care and research, where clinicians can view patient information in the context of prior patients, research cohorts, and real-world outcomes to support decision-making. At the same time, this information contributes to broader, governed research datasets, strengthening their completeness and accuracy for discovery and learning at scale.

The Role of CBTN and the RADIANT Platform

This initiative builds on years of groundwork laid by the Children’s Brain Tumor Network (CBTN) , a global collaboration that has already shown what’s possible when institutions share data and samples responsibly.

At the heart of PCX is RADIANT , a secure data platform developed through CBTN. RADIANT is being trained to use artificial intelligence (AI) to do something incredibly important and incredibly practical:

Read unstructured clinical notes (like PDFs or free-text reports)
Translate them into structured, searchable data
Reduce the need for manual data entry at participating sites
Allow insights from research to eventually inform clinical care

Why Pediatric Brain Tumors Were Chosen First

There were two major reasons pediatric brain tumors were an ideal starting point for testing this model.

First, pediatric brain tumors are among the most complex diseases to study. If a system can work here, where data comes from many sources, types, and institutions, it can work for many other pediatric conditions, too.

Second, the groundwork for this moment was laid years ago, including through early philanthropic investments. The Lilabean Foundation helped make this possible by supporting CBTN’s “Project Accelerate,” a multi-year effort to expand the network’s capacity to process and use large volumes of brain tumor data. As part of that commitment, LBF funded over $650,000 to hire data engineers and bioinformaticians and help build out CBTN’s data infrastructure, enabling the consortium to handle more complex data and accelerate discoveries in our first multi-year gift back in 2021, and has continued to build on this commitment by donating to continued efforts to build a solid infrastructure at CBTN. Critically, Project Accelerate also enabled the generation of robust molecular data for patient samples that had not previously been accessible to researchers. This retrospective molecular data now provides essential context for ongoing and future research and becomes even more valuable as new patients receive clinical sequencing, allowing comparisons across time, cohorts, and treatment approaches.

That investment, along with additional support from the Lilabean Foundation and other philanthropic partners, strengthened data standards, broke down silos, and expanded CBTN’s ability to create usable, research-ready datasets, making the network better prepared to pursue ambitious national initiatives like PCX. These capabilities—deep molecular data, strong data standards, and durable infrastructure—are foundational to RADIANT’s ability to connect clinical care data with research context in meaningful ways. Today, CBTN, once a consortium of just a few institutions, is a global network with trusted partnerships, shared standards, and a collaborative culture that makes scalable data sharing possible.

As leaders involved in the PCX initiative put it plainly: “This could not have happened if CBTN wasn’t prepared with established infrastructure and resources.” That readiness didn’t happen overnight. It reflects years of scientific progress and thoughtful investment from partners like the Lilabean Foundation.

Remembering 10 Extraordinary Lives Lost - Featuring LBF Hero Kasey Zachmann

Tue, 30 Dec 2025 17:07:14 GMT

Welcoming the Lilabean Foundation’s New Executive Director, Kelly Barch

Mon, 01 Dec 2025 14:56:42 GMT

The Lilabean F oundation (LBF) is thrilled to announce the appointment of Kelly Barch as our new Executive Director. Kelly will work closely with our Founder and President, Nicole Giroux , to advance the mission of the Lilabean Foundation and deepen our impact for children and families affected by pediatric brain cancer.

Kelly is a mission-driven leader with more than 20 years of experience building programs, strengthening teams, and driving meaningful change across organizations. She spent 16 years at the National Cancer Institute, where she led enterprise-wide recognition programs, executive recruitment efforts, high-profile events, and cross-functional workforce initiatives.

In addition to her public service, Kelly is the co-owner of Clotacin, a family-owned wellness company providing high-quality nutritional support to individuals affected by blood disorders. She oversaw operations, customer experience, and brand development, helping expand the company’s reach and impact.

A lifelong Washingtonian, Kelly lives in Kensington with her husband, Justin, their children, Taylor and Beau, and their dog, Boudreaux. Outside of work, she loves staying active with her family and cheering on her alma mater, the LSU Tigers.

When asked what excites her most about this new chapter, Kelly shared:

“I am honored to step into the role of Executive Director and excited to bring my passion for service to the Lilabean Foundation. The opportunity to fund critical pediatric brain cancer research and help raise awareness means so much to me, and I am truly grateful to be part of this mission.”

Please join us in warmly welcoming Kelly to the Lilabean Foundation. We look forward to the leadership, energy, and heart she will bring to this work!

An Evening of Hope: The Lilabean Foundation's 14th Annual Fall Ball

Wed, 12 Nov 2025 17:42:01 GMT

On November 1, 2025, the Lilabean Foundation for Pediatric Brain Cancer Research (LBF) hosted its 14th Annual Fall Ball at The Schuyler at the Hamilton Hotel in Washington, D.C., raising over $1.1 million to support vital pediatric brain cancer research. This fundraising milestone reflects the unwavering commitment of the foundation’s community and partners to improve outcomes for children diagnosed with brain cancer. The evening was one of celebration and remembrance, as we honored three cherished LBF Heroes—Cameron, Kasey, and Reed—though their lives were far too short, their strength, joy, and bravery continue to guide our mission and fuel our determination.

The evening’s program was filled with heartfelt speeches that reminded guests of the night’s true purpose. LBF Founder and President Nicole Giroux opened the program, sharing, “Studies say that we can go weeks without food, days without water, minutes without oxygen, but we can’t LIVE a MOMENT without hope. Your presence here tonight gives me and so many others immeasurable hope. Hope is what propels us forward. Hope gives us strength to endure hardship and believe in a better future.”

The first award of the night was the LBF “Cam’s Crew” Volunteer of the Year Award , presented to the Behr Family . Evan and Caitlin Behr, along with their family, have been deeply involved with LBF since 2021, generously sharing their time, expertise, and resources. LBF is deeply grateful for their unwavering commitment and generosity, which embody the spirit of this award, created in honor of LBF Hero Cameron Corno and her family.

One of the most moving moments of the night was the presentation of the Jack Purssord Courage Award to Ben Bellavia-Cortezi , age 18, honoring his extraordinary strength and resilience throughout his battle with medulloblastoma. Ben’s remarks captivated the audience with their wisdom and grace. He shared, “Every single pediatric brain cancer patient and survivor is so much more than their diagnosis… I believe strongly that with more funding, researchers can develop better treatments- ones that not only save lives but also preserve the quality of those lives.” Ben is applying to colleges for next fall and plans to study mechanical engineering.

The funds raised at this year’s Fall Ball will go directly toward groundbreaking research initiatives to discover new treatments and scientific advances for children with pediatric brain cancer. The Lilabean Foundation extends heartfelt thanks to all the sponsors, attendees, volunteers, and donors who made this year’s event such a success. As Ben so wisely put it, “Together, we can give more kids the chance to grow up, chase their dreams, and tell their own story.”

Learn More and Get Involved

For those unable to attend the Fall Ball, there are still many ways to be part of the Lilabean Foundation’s mission. To learn more about upcoming events, volunteer opportunities, or how to make a donation, please visit www.lilabeanfoundation.com .

Together, we can continue to bring hope and funding to pediatric brain cancer research.

LBF'S 9-YEAR-OLD HERO FIGHTS BRAIN CANCER WITH HER MAGIC WAND

Wed, 28 May 2025 23:20:25 GMT

Funding the Fight Against Pediatric Cancer with Nicole Giroux

Wed, 28 May 2025 21:54:00 GMT

The Lilabean Foundation’s Transformative Partnership with CBTN Drives Groundbreaking Advances in Pediatric Brain Cancer Research

Wed, 12 Mar 2025 22:31:17 GMT

The Lilabean Foundation (LBF) has played a vital role in advancing pediatric brain cancer research, providing significant support to the Children’s Brain Tumor Network (CBTN) based at the Children’s Hospital of Philadelphia. From its origins as a small family foundation, LBF has grown into one of the most influential contributors to CBTN, driving innovative research and achieving new milestones in philanthropy.

One of the most notable impacts of LBF’s support is its investment in Project Accelerate, an initiative designed to expedite research and enhance the Pediatric Brain Tumor Atlas. Through LBF’s backing, CBTN has been able to recruit essential data engineers and bioinformaticians, improving research methodologies and strengthening data models. This investment has helped break down silos and create more robust predictive models, optimizing diagnostic accuracy and advancing AI technology. This initiative is positioning CBTN to achieve transformative breakthroughs in precision care and treatment for pediatric brain tumors

“The impact of The Lilabean Foundation's generosity cannot be overstated,” said Dr. Adam Resnick, Scientific Director of the Children’s Brain Tumor Network.” “With this partnership, we are paving the way for the next era of pediatric brain cancer treatment and care. Thanks to this continued support, we are one step closer to ensuring that children with brain tumors have the best possible outcomes.”

Maximizing Research Potential and Driving AI Innovation:

LBF’s contributions have also been instrumental in maximizing the impact of the National Institutes of Health’s (NIH) data generation initiative. With LBF’s support, CBTN was able to extract and ship over 7,000 specimens, enabling the standardization of critical molecular data. This data has formed the foundation for AI-driven technologies, putting CBTN at the forefront of AI research and allowing for discoveries that were once unimaginable. By integrating clinical, molecular, and imaging data into a single multimodal dataset, this collaboration is enhancing the ability to create more individualized and effective treatment plans for children with brain tumors.

“The integration of this multimodal data is a game-changer,” said Nicole Giroux, Executive Director of The Lilabean Foundation. “It has the potential to dramatically improve how we understand and treat pediatric brain tumors.”

Preparing for Future Breakthroughs:

With LBF's continued support, CBTN is now poised for its next big leap in research. The foundation’s investment in Project Accelerate has led to the creation of an extensive multimodal dataset, which was instrumental in securing a first-of-its-kind award from the Advanced Research Projects Agency for Health (ARPA-H). This prestigious award, focused on pediatrics, combined with a new partnership with Amazon Web Services, positions CBTN for major advancements in AI capabilities and further opportunities for breakthrough research.

A Legacy of Impact:

LBF’s sustained commitment to CBTN is a testament to the power of philanthropy and the profound impact that a dedicated donor community can have on children’s healthcare. Their investments have not only laid the groundwork for groundbreaking research but are also shaping the future of pediatric brain tumor treatment and care, from bench to bedside.

“We are incredibly grateful for the support of The Lilabean Foundation,” said Jena Lilly, executive director of CBTN. “Their partnership has been invaluable in driving forward our shared mission to improve the lives of children battling brain tumors. Together, we are creating a future where cures and better treatments are within reach.”

Bethesda Magazine Features LBF in January/February Issue

Tue, 11 Feb 2025 03:41:25 GMT

We are thrilled to be featured in the Bethesda Magazine January/February 2025 edition! It’s a privilege to share the work we’re doing at the Lilabean Foundation to support families and children and the heartfelt origin story of why the foundation exists. Grateful for the opportunity to amplify our mission and continue making a meaningful impact in the community. Thank you Amy Halpern and Bethesda Magazine for capturing and creating such a heartfelt feature.

Click here to read the article and the January/February edition of Bethesda Magazine.

LBF Fall Featured in DC Modern Luxury February Edition

Tue, 11 Feb 2025 03:18:04 GMT

We are honored to have a full-page feature of Fall Ball 2024 in the February issue of DC Modern Luxury. A big thanks to Michael McCarthy and the team at DC Magazine for including us!

Check out the piece here .

An Evening Surrounded by Hope at The Lilabean Foundation's 13th Annual Fall Ball

Fri, 22 Nov 2024 04:18:19 GMT

On November 2, 2024, the Lilabean Foundation for Pediatric Brain Cancer Research (LBF) hosted its 13th Annual Fall Ball at The Schuyler at the Hamilton Hotel in Washington, D.C., raising $900,000 to support vital pediatric brain cancer research. This accomplishment reflects the incredible commitment of the foundation’s community and partners to improve outcomes for children diagnosed with this disease.

The funds raised at Fall Ball will go directly toward groundbreaking research initiatives, with the goal of discovering new treatments and enhancing survival rates for children facing pediatric brain cancer. The evening was not only a fundraiser but also a celebration of the hope, courage, and resilience of those affected by pediatric brain tumors.

The event’s program featured highlights such as an inspiring keynote address by Dr. Kurt Newman, President Emeritus of Children’s National Hospital, an esteemed surgeon, author, and leading expert in pediatric health. Dr. Newman was joined by Dr. Brian Rood, Medical

Director of the Brain Tumor Institute at Children’s National Hospital, who is also the Scientific Advisor of the Lilabean Foundation. They spoke passionately about the critical need for advancing pediatric brain cancer research. The LBF “Cams Crew” Volunteer of the Year Award was presented to Rock Spring Contracting. For over 7 years, Rock Spring Contracting has been a loyal supporter of the Lilabean Foundation, helping raise more than $1 million for pediatric brain cancer research through their dedication to events like the Birdies for Brain Cancer Golf Tournament. We are deeply grateful for their unwavering commitment and generosity, which embodies the spirit of this award in honor of Cameron Corno and her family.

One of the night's most heartfelt moments was the presentation of the Jack Purssord Courage Award to Damian and Kara Wroblewski in honor of their late son, Damian Jr. This award recognizes Junior’s resilience and courage throughout his battle with brain cancer. The moving tribute video featured Junior in his own words. It was followed by heartfelt remarks from Junior’s father, which inspired the crowd, ending with one of Junior’s favorite phrases, “All gas, no brakes.”

Reflecting on the event, LBF Founder and Executive Director Nicole Giroux expressed profound gratitude: “The funds we raised at our 13th Annual Fall Ball are a testament to the generosity of our community—donors, sponsors, and volunteers—who came together to support our mission. Their dedication allows us to continue funding essential research and raising awareness for pediatric brain cancer.”

The Lilabean Foundation extends heartfelt thanks to all the sponsors, attendees, volunteers, and donors who contributed to the success of this year’s Fall Ball. With the continued support of our community, we move forward, toward a day when pediatric brain cancer is no longer a threat to young lives.

Learn More and Get Involved

For those who were unable to attend the Fall Ball, there are many ways to get involved with the Lilabean Foundation’s mission. To learn more about upcoming events, volunteer opportunities, or how to make a donation, please visit www.lilabeanfoundation.com. Together, let’s continue to bring hope and funding to pediatric brain cancer research.

Don't Forget to Check Out This Year's Moving Fall Ball Video

The Lilabean Foundation Champions of Hope of Fox5 DC: A Look at the Fight Against Pediatric Brain Cancer

Tue, 29 Oct 2024 04:34:43 GMT

This weekend, Nicole Giroux, Founder and Executive Director of the Lilabean Foundation, and Dr. Brian Rood, Scientific Advisory Member, joined Fox5 DC’s Maureen Umeh to discuss LBF’s mission to advance pediatric brain cancer research. They highlighted upcoming events like the LBF Fall Ball and shared their ongoing work to support cutting-edge research and bring hope to families facing childhood cancer.

Catch the full segment for more insights!

The Lilabean Foundation Funds Two Cutting-Edge Initiatives

Tue, 23 Jul 2024 21:21:51 GMT

The Lilabean Foundation is excited to announce funding for two new innovative projects. As we move into the second half of 2024, our commitment to supporting groundbreaking research remains steadfast. Here’s a closer look at the new projects we’re funding and how they’re poised to make a difference.

Transforming Brain Tumor Care for Children: Neonatal Ependymoma Injection Pilot Experiment

Ependymoma is the second most common malignant brain tumor in children, comprising about 10% of all pediatric brain tumors. Despite efforts to enhance care, survival rates have only slightly improved over the years. The difficulty in studying and treating ependymomas stems from the lack of effective experimental models that accurately replicate the human tumor environment.

Under the leadership of Dr. Brian Rood at Children’s National Hospital, the project aims to create better pre-clinical models for studying ependymoma. The approach involves using mice with fully functioning immune systems to develop these models. By injecting tumor cells into neonatal mice, researchers hypothesize that the cells will grow without rejection, allowing for a more accurate study of tumor-immune system interactions.

Why is this project important?

The new models will help study the complex interactions between ependymoma tumors and the immune system, paving the way for more effective treatments. By understanding the biology and immune dynamics of these tumors, the research aims to improve survival rates and treatment outcomes for children with ependymoma.

Advancing Pediatric Brain Tumor Research Through Comprehensive Data Integration and AI

The Lilabean Foundation will continue to support the work of the Children’s Brain Tumor Network (CBTN) with a two-year grant of $500,000 to CBTN to include a focus on data harmonization and optimization, AI pipeline development & refinement, and project management. LBF’s previous investments have laid the foundation for groundbreaking research and transformative outcomes in pediatric brain tumor research and care. LBF is honored to continue to support this work in its next phase, by supporting data optimization as well as opportunities that utilize this data in action. These projects prioritize the finishing pieces to the foundational data that will map the frontier to translational work at the bench, ultimately creating tangible impacts for children and families affected by brain tumors.

Supporting Data Opti mization with CBTN:

The comprehensive data enabled by the support of the Lilabean Foundation is driving previously unimaginable research and discoveries in pediatric brain tumor studies. CBTN is now poised to build on this by working with disease experts to create customized data models for many types of brain tumors. By assessing the data that CBTN currently collects, especially imaging and molecular panel data, they will identify key areas for improvement and focus on collecting and harmonizing retrospective data to integrate it with advanced AI, helping to understand brain tumors better.

As part of this funding, a few of the expected outcomes related to data optimization are:

Enhanced Disease Data Models
Empowered Research Capabilities
Accelerated Discoveries

Supporting Data in Action with CBTN:

With the solid foundation of optimized data capabilities, researchers are poised to push the boundaries of pediatric brain cancer research. The Lilabean Foundation will support two transformative projects.

As part of this funding, a few of the expected outcomes we will see from projects that will have real-time impact on patients diagnosed with brain tumors are:

Transform how we care for children with medulloblastoma and improve outcomes by reducing unnecessary side effects
Pilot the validation of 3D organoid models as representation of patient tumors
Establish a precision medicine framework that informs targeted therapeutic strategies

Why are these projects important?

Investing in the enhancement of the existing CBTN dataset through retrospective data collection and harmonization efforts is essential to advancing pediatric brain tumor research. By maximizing the potential of multimodal data integration, paired with cutting-edge AI innovations and a strategic approach to real-time application through laboratory projects, researchers and doctors will be able to unlock new insights and drive discoveries that will ultimately improve outcomes for children with brain tumors.

Thank you to all of the LBF donors, sponsors, and supporters who continue to make investments like this possible. To learn more about either of these investments, please reach out to info@lilabeanfoundation.com

Meet Our 2024 LBF Fellow, Jian Li, PHD

Mon, 08 Jul 2024 21:38:14 GMT

Meet our 2024 LBF Fellow, Jian Li, PhD

The LBF Fellowship Fund is a program that was established in 2018 with a mission to fund the next generation of researchers in the pediatric brain cancer space. The goal of this program is to provide seed funding to recruit and retain young, talented researchers and clinicians who plan to dedicate their careers to improving the lives of children with pediatric brain cancer. In order to advance the field of pediatric brain cancer research we believe that it is vital to support the next generation of researchers and clinicians. We are thrilled to be funding the work of Jian Li, PhD at Children’s National Hospital in Washington, D.C. in 2024. Read below to learn more about our 2024 LBF Fellow and the work he is doing to advance research for pediatric brain cancer.

Can you tell us a bit about what you do and your role at the Lab at Children’s National Hospital?

I'm a staff scientist in Dr. Pei's lab. I started working here last July. My work mainly focuses on Medulloblastoma. Since the recurrence and metastasis tumors always have poor prognosis, we generated a mouse myc-amplified group3 tumor and mimicked the treatment on patients by treating the tumor-bearing mice with radiation and find mice developed recurrence and metastasis tumors. We are now generating CAR-T cells to target these tumors, and try to figure out the tumor microenvironment, and whether we could manipulate TME to enhance immunotherapy. My role is to lead the project, design, and conduct experiments, organize and interpret data, and write papers and grants.

What led you to specialize in pediatric brain cancer research/ treatment?

I believe cancer could be the biggest hazard to human health, now and in the future. Brain tumors are the deadliest childhood tumor.

Can you share a fun or interesting fact about yourself that people might not know?

Before I went to university, my dream was always to be a machine engineer and create machines like transformers. However, I ended up studying bioengineering at university and was fascinated by elegant tiny machines like ATP synthase, so I decided to continue my journey with these bio-machines.

What do you hope to do in the future?

I hope to develop therapeutics that can eventually eliminate cancer cells.

What continues to drive you to do this research in pediatric brain cancer research?

Knowing that my research could eventually help kids battling such a terrible disease.

AWS is Providing $10 million to Accelerate Research for Pediatric Health Care and to Better Understand Rare Diseases

Thu, 27 Jun 2024 02:52:43 GMT

LBF Executive Director Nicole Giroux was honored to be in attendance at the Amazon Web Services DC Summit, when AWS announced a $10 million commitment to help nonprofit institutions leverage AWS to advance pediatric and children’s causes worldwide, with a $3 million philanthropic commitment to be distributed between three organizations: Children’s National Hospital in Washington, D.C.; Nationwide Children's Hospital in Columbus, Ohio; and the Children's Brain Tumor Network (CBTN), located at CHOP. The funding will help to provide access to vital research for a vulnerable patient population that often suffers from restricted resources and limited sample sizes.

LBF is a long-time partner and Executive Council Member of CBTN. CBTN is already working with AWS to make it easier to aggregate data to accelerate research and trials. This investment will help advance that work and bring more hope and options to families facing this horrible diagnosis.

To learn more about how this exciting announcement will impact the pediatric brain cancer community, check out this article featuring Nicole Giroux.

Hope in the Face of Recurrence: A Mother's Reflections on her Daughter's Battle with Anaplastic Ependymoma

Mon, 27 May 2024 19:10:57 GMT

March 27, 2020, marked the beginning of a journey that would test the resilience of the Corno family in ways they never imagined. Our LBF Hero Cameron , just 18 months old at the time, was diagnosed with anaplastic ependymoma, setting off a series of challenges that would redefine their lives. Today, as we reflect on Cameron's journey since that fateful day four years ago, Stewi Corno, Cameron's mom, shares her thoughts and experiences, offering insights into the highs, lows, and the unwavering strength that has sustained them through it all.

Can you tell us a little bit about your journey with Cameron's diagnosis and treatment for Anaplastic Ependymoma since she was diagnosed in March of 2020?

Cameron was initially diagnosed with brain cancer as an 18-month-old on March 27, 2020. Her initial symptom was occasional vomiting. As it started getting worse, the medical team decided to “rule out neuro” and in the process, uncovered the cancerous tumor, a grade 3 anaplastic ependymoma, which required emergency surgery.

As you may have put together, with the diagnosis occurring in March 2020 it was early stages of COVID, so the hospital was under strict guidelines for only 1 parent with minors and no visitors for adult patients. Thankfully, after a week of rotating shifts between Andy and I, the hospital made an exception to allow 2 parents at the bedside due to the severity of the situation. The initial resection neurosurgery took 14 hours, it was excruciating, especially not being able to see or hug our parents, families, or friends.

Three neurosurgeries in 10 days, a week on a ventilator, PT/OT/SLP therapies for recovery, 7 weeks of proton beam radiation, 4 rounds of intensive in-patient chemo, 1 year of metronomic (maintenance) at-home chemo and she was cancer and treatment free December 2021! Cameron was a healthy, happy 3-year-old girl enjoying soccer, tennis, dance, swimming, school, going to the beach, playing with friends and cousins… living her best life!

In 2022 she had scans every 3 months. All clear. They remained stable. “Scanxiety” was still in full effect, but we remained cautiously optimistic. Cameron was thriving and that made us more hopeful. In 2023 she moved to scans every 6 months. That was an exciting, but nerve-racking milestone, yet giving us more hope and optimism than ever before.

In a routine scan on August 2, 2023, while Cameron was still sedated and in recovery, multiple doctors came in the room and we received the worst news of our lives…” The cancer is back”. Once you go through the “your kid has cancer” conversation, you think you’d be prepared to handle it again, but nothing prepares you for the second time. All those feelings of hope and optimism are shattered in that instant, bringing you right back to the darkest moments of the initial battle. It’s a mixture of emotions, especially with our 4-year-old daughter right there… sleeping peacefully, blissfully unaware of what’s to come, appearing healthy, symptom-free and perfect on the outside. On one hand, we were grateful for the year and a half of normalcy our family had, and on the other hand, we were filled with anger and doubt that it came back so quickly. The doubt sounds something like this - all the treatment that made her so sick, was it worth it? Did it buy us more time or not actually help?

So there is a tumor in her MRI. The cancer is back. Now what?

Nonstop meetings take place over the next few days to make a plan. Cameron’s neurosurgery is scheduled for August 9th. We enjoyed a fun-filled weekend of the beach and pool, soaking up the last few days of a “normal” summer. The surgery went well - gross total resection, meaning >95% of the tumor was successfully removed. Recovery consisted of getting admitted to a rehabilitation hospital and intensive therapies (OT/PT) to rebuild her physical strength to learn to sit, stand and walk on her own.

After she recovered from surgery, she began proton beam radiation again in September 2023. On the first day of radiation treatment, the molecular studies came back with some devastating news and an impossible decision to make about our path forward.

The molecular tumor studies showed Cameron’s tumor recurrence contains the “6q-loss” mutation, which is known in medical journals for having a “dismal survival rate”. According to the medical team, 6q-loss has a ~90% chance of recurrence, a >60% chance the recurrence will spread/metastasize (making it harder to treat, likely inoperable), and a 5-year overall survival (OS) rate of less than 10%. We haven’t lost hope, but it was extremely difficult to come to terms with this new information - with very little time to deliberate on the treatment plan.

What came next was the hardest decision we have ever had to make - an example of the limited treatment options and impossible decisions pediatric cancer families have to make every day. There is currently no FDA-approved method of treatment, though early studies are showing major promise in combining 5FU (chemo drug) with radiation for ependymoma patients. Since this is a pre-trial treatment path, it is up to the parents on how to proceed. Combining this chemo drug with radiation contains the possibility of severe side effects these can manifest as issues with the following - balance, pressure headaches, memory loss, personality changes, seizures, issues with breathing or swallowing, face drooping, inability to move her left side, and in some cases, can be fatal. Unfortunately, it isn’t possible to adjust the treatment plan real time since these potential risks often don’t occur until 12-24 months after the treatment.

After weeks of discussion, research, and prayer - we ultimately decided to move forward with the 5FU chemo treatment in conjunction with radiation. Cameron finished the radiation + 5FU chemotherapy combination in October and she has handled it well - so far. During the break between radiation and chemo, Cameron recovered and even got to go on her Make-A-Wish after being postponed from October with our family, including all 6 of her cousin besties, aunts and uncles, and grandparents!

After the trip of a lifetime, we returned home, and Cameron began the experimental chemotherapy treatment plan to treat the 6q-loss mutation. The “typical” chemo side effects may consist of increased fatigue, flu-like symptoms, nausea, vomiting, diarrhea, hair loss, suppressed immune system, headaches, bleeding, etc. - as well as the risk of stomach ulcers and damage to the GI tract.

Right now, Cameron is in the 3rd round of this experimental chemotherapy treatment. How’s she handling it so far? That’s a complicated question. Each round has landed her in the ER and admitted to the hospital due to GI challenges, multiple infections, and sepsis scares, which were actually a result of severe dehydration from the nonstop diarrhea. But back to the question…so far, she’s handling round 3 of chemo very well, today, she is at school, last week she participated in dance, and she even went to soccer after her chemo infusion last week! Bottom line, we are currently having more good days than bad days - and so grateful for the good days!

How has this recurrence affected your family's daily life and routines?

Cameron’s recurrence has significantly impacted our family’s daily life and routines in so many ways. The most significant difference this time is Cameron’s little sister, Kaitlin, was born on November 11, 2020. Thankfully, Cameron was through the majority of the treatment before Kaitlin was born, and we only had to juggle the maintenance chemotherapy with a newborn. When the recurrence happened, Kaitlin was 2 years old and watching her try to understand where her parents are and what’s happening to her big sissy has been the most challenging part of all.

Kaitlin spent weeks hopping between grandparents, an AuPair transition, and neighbors while Andy and I lived in the hospital with Cameron. We are now in a more stable place with Cameron’s treatment, so we are able to maintain Kaitlin’s routine - even when Cameron is at treatment or admitted. Going through this without COVID restrictions has given us the ability to lean on our village of family, friends, and neighbors. We’ve brought Kaitlin into the hospital to see Cameron whenever we think it might help lift either of their spirits, and that’s been really special but can be disruptive to Kaitlin’s routine when it’s time to leave her. It’s not all bad, though; the sweet sister bond Cameron and Kaitlin have formed through all of this, and Kaitlin learning to have empathy, like the fact she wants to be a doctor when she grows up.

Of course, other aspects of our life have been impacted by the recurrence too - like not being able to travel or plan ahead, missing family events, like the annual Carolina beach trip with Cameron’s cousins; childhood milestones being impacted, like missing the first day of school - among so many other things. Plus, the fact that both of Cameron’s parents are juggling full-time, corporate, client-facing jobs. Andy and I are super grateful to work at such supportive companies, and for the countless colleagues who have stepped up to keep everything running smoothly.

What are some of the biggest challenges you've faced since Cameron's recurrence?

Cameron had her fifth brain surgery - just 3 weeks prior to her fifth birthday, and the 3 weeks following were much harder than we could have ever imagined.

The main difference between 2020 and 2023 post-surgery recoveries, was in 2020, she had to relearn how to talk again, which required speech therapy, and luckily in her most recent recovery, her speech and cognitive function were not impacted. However, teaching an almost 5-year-old to walk again is much more difficult than an 18-month-old.

As expected, we spent a few weeks in-patient in the PICU, followed by Neuro floor. Cameron was then transported to the National Rehabilitation Hospital for intensive in-patient therapies, which took a toll on Cameron and our family. Although the surgery went well, Cameron had paralysis on her left side and had to relearn how to use her entire left side, which meant learning to move her hand, arm, leg, etc, again. Milestones like sitting, standing, and walking were the focus while in intensive rehab. Her schedule would consist of 60-90 minutes of OT and PT - multiple times a day. Lots of pep talks and tears every day. The CAMSTRONG playlist was created and helped in some of those difficult moments when a pep talk wasn’t enough.

As hard as it was, watching Cameron’s strength, and resilience as she hit these milestones was the most inspiring moment of my entire life. Cameron used a wheelchair while at the hospitals, then a walker while at home, and ON HER 5TH BIRTHDAY, she started walking unassisted on her own for the first time post-surgery!!! Truly incredible to witness her determination to make her birthday wish come true.

What advice would you give to other families who may be going through a similar situation?

Leverage your network to find the best medical team you possibly can, then get second and third opinions. A fellow cancer mom once said to me, “you get 3 quotes to do a house project, but only 1 on your daughter’s brain?” Mobilize your village and community to support you. If you’re reading this and ask me or Nicole for help, you have my word that we will, no matter where you live or what the diagnosis might be. Ask for help. People genuinely want to help, and the best thing you can do is let them help in whatever way is best for your family. Simple things go a long way - planning a special play date for the sibling, dropping off arts and crafts while in the hospital, or even picking up medicine from the pharmacy. It can be nerve-racking letting outsiders into a very personal family matter, but I’ve learned that everyone’s opinions come from a positive and helpful place, and the benefits far outweigh the negatives, so here we are….spilling my guts on the internet. But if this can help another family going through this, spread awareness of the need for more research, and ultimately lead to better treatment options- then it’s worth it. Cameron’s journey becomes more than just an inspirational story - a catalyst to move the needle for all pediatric cancer research, especially the severely underfunded, leading cause of disease-related deaths in kids - pediatric brain cancer.

What are some of the things that bring you hope and joy during this difficult time?

Put simply, once going through a childhood cancer diagnosis, you will forever live your life differently. We seize the day, good days are really good. What we thought were bad days pre-cancer, probably aren’t so bad after all. Cameron’s feeling well today, what should we do? It’s definitely a “YOLO” attitude, like going to the beach for the day, taking the kids sailing in Annapolis, or horseback riding for the first time. But also, appreciating and finding joy in the simple things - that may have seemed monotonous before…like giving your kids a bath at home (vs the hospital), being able to read books in her own bed, getting to do bedtime with both kids together. Read the extra book or 3. These things are exhausting and dull to most parents of young kids, but I try to savor and appreciate them now. Just ask Andy how long the bedtime routine can take some nights!

The Power of Reconnection and Collaboration in the Face of Childhood Brain Cancer

Mon, 20 May 2024 03:24:18 GMT

By Nicole Giroux, Founder and Executive Director of the Lilabean Foundation for Pediatric Brain Cancer Research

Life can present startling coincidences. In the early 1990s, Meg Cortezi and I were high school classmates and teammates at Notre Dame Preparatory School in Baltimore, MD. Little did we know that a friendship that started in the halls of NDP would be rekindled in the halls of Children’s National Hospital in Washington, DC, thirty years later. Our former mutual worries about mundane high school things suddenly transitioned into the shared terror of having a child with brain cancer.

In 2015, when Meg’s son Ben was diagnosed with medulloblastoma, an aggressive malignant brain cancer, my family was already several years into our daughter Lila’s brain cancer journey. Lila was diagnosed in 2009 at 15 months old with inoperable low-grade glioma. Several years later, my husband and I started the Lilabean Foundation for Pediatric Brain Cancer Research (LBF). Our foundation's singular mission is to fund collaborative and innovative research to discover safer and more effective treatment options for children with all types of brain cancer. Thirteen years later, I am proud to share that LBF has raised over $5 million and has funded some of the world’s top neuro-oncology institutions.

I was completely shocked to learn of Ben’s diagnosis. What are the odds that two friends from a small class of 75 women both have children with brain cancer? This disease is so often categorized as ‘rare,’ and it’s instances like these that remind us that, in reality, it is far too common. The bonds formed in high school allowed us to reconnect immediately. Ben was in the throes of toxic treatments and there was no time to be wasted. Meg was quick to realize the importance of funding research to identify treatment options for kids like Lila and Ben. It wasn’t long before she became an incredible advocate and involved her family, friends and colleagues at TEKsystems in her advocacy.

In 2019, Meg became an LBF board member. Soon thereafter, TEKsystems began partnering with LBF more frequently and intentionally. Since 2020, TEKsystems has supported our mission and has acted compassionately towards the objectives of our foundation. TEKsystems has played an important role in raising awareness about the severity of childhood brain cancer and the dire need for private funding. For instance, most people don’t know that approximately 11 children are diagnosed with a malignant brain tumor every day in the United States.

TEKsystems’ support is helping to educate communities on these alarming statistics. And even though brain cancer is the deadliest form of cancer in children, the pediatric brain cancer landscape is grossly underfunded. TEKsystems continues to help LBF fill the federal funding gap with private support for institutions, including the Brain Tumor Institute at Children’s National Hospital, where Lila and Ben remain patients. The relationship between TEKsystems and LBF is an excellent example of the impact that is possible when partnerships are prioritized.

Ben and Lila are two of many LBF HEROES. Their stories inspire. Meg’s willingness to share her family’s story has paved the way for LBF to connect with other families including TEKsystems’ colleague, Tim Brown, whose daughter Abby also suffers from low grade glioma brain cancer.

At our 30 year high school reunion, Meg hosted a cocktail party for our NDP classmates to learn more about LBF. It was powerful to connect with old friends and share our stories of heartbreak and resilience.

It is surreal to think that Ben and Lila are now the same ages that Meg and I were when we first met. I am so grateful for Meg’s friendship and commitment to the Lilabean Foundation. Our partnership with TEKsystems is a testament to the power of turning suffering into hopeful action.

May is brain cancer awareness month and we hope that you will consider becoming an 11for11 member in honor of those approximately 11 children who are diagnosed with brain cancer each day. Please join us in our mission to give hope to children and families suffering from this terrible disease.

A Conversation with LBF Scientific Advisor, Jessica Foster

Thu, 09 May 2024 18:43:24 GMT

In 2023, the Lilabean Foundation experienced significant growth, expanding from one Scientific Advisor to a Council of three esteemed professionals. We were thrilled to welcome Dr. Jessica Foster and Dr. Mateusz Koptyra, alongside Dr. Brian Rood, as members of this esteemed advisory group.

Today, we have the pleasure of introducing Dr. Jessica Foster through an engaging Q&A session. Dr. Foster is a distinguished clinician and researcher, dedicating her expertise to both patient care and groundbreaking research endeavors. With over a decade of experience at the Children’s Hospital of Philadelphia, her focus lies in pediatric brain and spinal cord tumors. Driven by a passion for improving outcomes, she and her team are pioneering innovative approaches, including leveraging the immune system to combat these challenging cancers.

Join us as we delve into Dr. Foster's journey, her pioneering work, and the profound motivation behind her dedication.

Q: What led you to specialize in pediatric brain cancer research & treatment?

Dr. Foster: I was intrigued by both the brain and cancer from an early age, starting in high school. My major in college was neuroscience, and it was during college I decided to pursue a career in medicine, and I was already drawn to pediatric oncology. This interest never waivered during my residency, and I ultimately chose the Children’s Hospital of Philadelphia (CHOP) for my fellowship training so I could learn more about the cutting-edge CAR T cell technology. Once I arrived at CHOP I finally put all my passions together, focusing on pediatric neuro-oncology and researching novel immune-based therapies, specifically focusing on CAR T cells for central nervous system tumors.

Q: As both a clinician and a researcher, how do you balance the emotional challenges of working with pediatric patients with the scientific and medical aspects of your job?

Dr. Foster: I am never more motivated to get back into the lab and help find a cure than after my time attending on the inpatient service. Seeing patients directly inspires me to ask more questions and try to find better answers. As a mother myself, taking care of pediatric patients can hit quite hard emotionally. I try to use that as fuel to work harder and push our research forward, faster.

Q: How do you stay hopeful and positive in the face of such a challenging disease?

Dr. Foster: I believe we are on the cusp of dramatically changing the outcomes for patients with CNS tumors. Looking back at pediatric oncology history, the treatment of leukemia changed over the course of a few decades with a deeper understanding of the cancer’s biology and well-run, large-scale, clinical trials. We are now at that point for pediatric CNS tumors where we are truly understanding the biology of all the diverse tumor types and using that knowledge to design thoughtful trials.

Q: How do you incorporate research findings into your clinical practice?

Dr. Foster: I am constantly scouring the literature for new data for all of my patients. For many, there is a standard of care therapy and I will always use that first and foremost. Even our standards of care are constantly changing based on the latest research. For others either without standard of care or who have relapsed, I try to see what biological insights we are gaining for their tumor type, and if there any open trials that seem to target the tumor best. If no trials are available, I will look to see if there are other drugs available either commercially or through expanded access that might help.

Q: What are your hopes for the future of pediatric brain cancer research and treatment?

Dr. Foster: My hope is that I never have to tell a family that we have no options for their tumor. I personally hope that immunotherapy becomes a mainstay of treatment and that we can improve access for all of our novel therapies across the globe.

Q: Outside of work, what are some of your interests and hobbies?

Dr. Foster: My husband, two children, and I love to go skiing in the winter and swimming in the ocean or lake in the summer. I am an avid Phillies fan, so you can find me at Citizens Bank Park quite a bit sporting a Realmuto jersey. I also enjoy traveling and running with friends.

Day One Biopharmaceuticals Announces FDA approved of New Drug Application for relapsed or refractory pediatric low-grade glioma (pLGG)

Sun, 28 Apr 2024 18:50:08 GMT

Yesterday Day One Biopharmaceuticals announced that the U.S. Food and Drug Administration (FDA) approved their

New Drug Application (NDA) for relapsed or refractory pediatric low-grade glioma (pLGG), the most common form of childhood brain tumors. FDA approval means that the drug is now available for prescription by health care professionals in the United States.

Jeremy Bender, Ph.D., chief executive officer of Day One shares that, “this approval ushers in a new day for children living with pLGG, and we are pleased that we can deliver the first and only targeted medicine for both BRAF fusions and mutations, for children living with relapsed or refractory pLGG, the most common form of pediatric brain cancer.”

Find our Community Statement here.

The LBF Community Breaks Records, Determined to Fund Change

Fri, 10 Nov 2023 02:21:26 GMT

On Saturday, November 4th, LBF Celebrated the 12th Annual Fall Ball! This year’s theme was Determined to Fund Change. We were joined by over 425 attendees and exceeded our fundraising goals. The funds raised will support the work of doctors and researchers who are working diligently to find safe and effective treatments for children who are battling pediatric brain cancer. For many children battling brain cancer, there is just not enough time, and these funds will help to make progress NOW.

This year’s event featured the LBF HERO Wall, an interactive wall that featured the 19 LBF Heroes who are a constant reminder of why we remain determined to fund research. The event also featured keynote remarks from Dr. Sam Blackman, Co-founder, and Head of R&D at Day One Biopharmaceuticals. His message focused on hope. His speech was incredibly moving, and as he wrapped up he left the crowd with a final thought “With increasing years…we all learn that while hope is essential in caring for children with cancer, hope alone is not sufficient to create change. As both a physician and a scientist, it doesn’t take long to realize that while hope is a critical part of the equation, hope alone doesn’t solve problems. There is another critical variable that is required: determination. In the calculus of medicine development, hope multiplied by determination yields change. It is this equation that fuels the work of those who care for children with cancer, and those who try to discover and create new therapies… It was my belief 5 years ago, and my belief still today, that by having both sides of the equation balanced - hope and determination – plus a little luck and some funding – that you can create change.”

Dr. Blackman’s remarks were followed by the presentation of the 2023 Jack Purssord Courage Award. The spirit of this award reflects a happy soul who starts the day with a smile and honors LBF Hero Jack Purssord . This year the award was introduced by Kaitlyn Purssord, Jack’s older sister, who presented the award to LBF Hero, Kasey . We were honored to be joined by Kasey’s parents, Alyssa and Joe Zachmann, who accepted the award on Kasey’s behalf. Alyssa stated in her remarks, “We hope for a day when all future LBF Heroes are living fully into their adult years, just as all of us have had the privilege to do.” Joe Zachmann ended their moving speech with words of gratitude, “You are all part of the solution, and our entire family thanks you from the bottom of our hearts…”

We premiered an impactful video highlighting the critical need for progress to move faster for families experiencing a diagnosis but also for those who experience a relapse and are running out of approved options. This was followed by a record-breaking Raise the Paddle effort to support critical brain cancer research. If you weren’t able to attend this year’s Fall Ball, we encourage you to spend a few minutes watching this video . Although heartbreaking, it shows why we must be Determined to Fund Change for kids like Kasey, Cameron, and so many others. If you feel inclined to join us, you can still contribute here .

We are so grateful for the overwhelming support of our sponsors, attendees, and all who supported the event. LBF remains determined to fund important research that will inform better treatment options and outcomes for children with brain cancer.

Resilience, Hope, and Collaboration: Cameron's Inspiring Journey with Childhood Brain Cancer

Mon, 23 Oct 2023 02:37:53 GMT

Picture yourself submerged in tranquil water, weightless and free. With every stroke or paddle, you glide effortlessly, your worries washing away with each ripple. It's a moment of pure freedom.

Now, meet Cameron Corno, a remarkable young girl who has discovered that same sense of liberation in the water. She isn't just swimming; she is finding solace. For Cameron, those moments in the water are when she feels most free and happy as she faces the impact of a brain tumor.

Cameron's journey is a story of courage, resilience, and the power to inspire change. This is the tale of a five-year-old girl who defies the odds every day, with a mission that promises a brighter future for all children.

Cameron is a lively five-year-old; a bundle of energy and creativity. Her days are full of laughter, joy, and dreams. She's the kind of child who loves to dance, paint, swim, and play doctor. She's a cherished daughter and a loving big sister, and has a smile that could light up a whole room.

In March 2020, Cameron's life took an abrupt turn. Her parents noticed something amiss with their usually energetic daughter. After an overnight hospital stay and several tests later, the results were life-altering: a tumor was compressing Cameron's brain stem.

Cameron underwent a 14-hour operation, followed by two additional brain surgeries. The Pediatric Intensive Care Unit (PICU) became her temporary home, a place where her parents watched her struggle to relearn the most basic human functions—how to eat, drink, talk, sit, crawl, and walk.

Seven weeks of radiation followed, as did four rounds of intensive chemotherapy. And, in December 2020, due to an inoperable spot on her spine, Cameron began a year-long regimen of oral chemotherapy.

Through it all, Cameron's spirit remained unbroken. Her love for swimming, the very activity that brought her joy and freedom before her diagnosis, served as a symbol of her resilience. She swam in a sea of uncertainty with remarkable courage, a beacon of hope for her parents in their darkest hours.

Unfortunately, in August 2023, an MRI revealed that Cameron’s cancer had returned. She had yet another major brain surgery and has started a 6-week radiation regimen with the possibility of chemotherapy to follow. The family is fighting to follow Cameron’s example of positivity and perseverance.

Cameron’s diagnosis has ignited a community to come together, yet again, to raise awareness and funds to support research for more effective treatments for children with brain cancer. At five years old, she has a mission: to fight and inspire others to do the same.

The Lilabean Foundation’s Commitment to Cures

For Cameron's parents, every day has been a rollercoaster of emotions. Amid the struggle, the Lilabean Foundation (LBF) emerged as a source of strength—a place that not only recognizes the depth of her family's anguish but also offers unwavering support when they need it most.

The family, filled with uncertainty and challenges, found a kindred spirit in Nicole Giroux, the founder of LBF. Nicole, a mother herself, knows firsthand the anguish of watching a child challenged by a life-threatening illness. Her daughter, Lila, also has brain cancer, and Nicole has walked the same painful path as Cameron's parents. After learning that brain cancer is the most fatal childhood cancer and that treatment options are severely lacking, the Lilabean Foundation was born in 2011.

Over the past 12 years, LBF has grown, extending its impact to support families like Cameron's around the world. The mission has remained unwavering: to fund ground-breaking research for children battling brain cancer today, while forging critical partnerships with leading-edge organizations to eradicate this disease forever.

"We're not just a foundation; we're a force for change. The support we receive from our community and partners like CBTN fuel our determination to find a cure." - Nicole Giroux, Founder & Executive Director at Lilabean Foundation

Better Treatments Today, an End to Cancer Soon

In the quest to combat childhood brain cancer, another organization stands shoulder to shoulder with LBF—the Children's Brain Tumor Network (CBTN). As a CBTN Executive Council member, LBF embraces the network’s two-fold imperative: to develop more effective treatments for kids today and eradicate these diseases for a brighter tomorrow. They are doing this by aggregating valuable data and resources across institutions and making them readily available to researchers and clinicians worldwide.

CBTN is a driving force behind accelerating research breakthroughs by as much as two decades. Their dedication to making a difference aligns seamlessly with the LBF mission. Together, this network is changing the course of history for children like Cameron, where data from young patients like her can illuminate understanding of the disease and pave the way for innovative treatments.

Amazon Web Services (AWS) Amazon Web Services (AWS) has forged a groundbreaking collaboration with CBTN in recognition of the network’s leadership in securely aggregating multi-modal data on consented patient from 35 member institutions and making that data accessible to researchers around the globe working to find cures for childhood brain cancer patients. AWS and CBTN are leading the way when it comes to open science models and harnessing the power of near-real time data and generative AI to help researchers, clinicians and biopharma companies work collaboratively to expedite the development of more precise, life-saving treatments.

The benefits of this collaboration extend beyond Cameron's journey. It extends to every child who faces the daunting diagnosis of childhood brain cancer. It's about ensuring that every child has the opportunity to grow, explore, and experience the feeling of complete freedom, just as Cameron does when she swims. And, it's about a future where the challenges of today become distant memories for all.

Hope for Cameron and All Kids

Cameron is more than a symbol of hope—she's an inspiration. In 2023, she became the artist for the AWS Limited Edition Healthcare Pin, a testament to her enduring determination. She serves as a reminder of why we must never give up. When a parent learns of a brain cancer diagnosis, the clock starts ticking, and it's up to organizations like LBF, CBTN, and AWS to accelerate research for cures.

To support this transformative partnership of the Lilabean Foundation, the Children’s Brain Tumor Network, and thousands of patient families like Cameron’s, GIVE NOW .

Cameron's Courage

“I like swimming because, even when I couldn’t walk, I could swim. People say I’m Super Cameron and I think swimming is my superpower!” - Cameron Corno

Day One Announces Updated FIREFLY-1 Data for Tovorafenib

Mon, 11 Sep 2023 02:45:06 GMT

Today, Day One Announces Updated FIREFLY-1 Data for Tovorafenib and Completion of Rolling New Drug Application (NDA) submission to U.S. Food and Drug Administration (FDA) for Relapsed or Progressive Pediatric Low-Grade Glioma (pLGG). Read more HERE .

The LBF 2022 Impact Report

Sat, 05 Aug 2023 02:53:38 GMT

LBF is thrilled to announce the release of our 2022 LBF Impact Report . We hope you will take a few minutes to check it out and learn more about the impact this community is making in the fight against pediatric brain cancer. It is filled with fun recaps, stories of courageous individuals in the LBF community, and more.

Better Treatment Option for some Low-Grade Glioma Patients Becomes a Reality

Fri, 24 Mar 2023 03:01:52 GMT

March 16 marked a historic day for the pediatric brain cancer community with the passing of the first-ever drugs approved by the FDA to treat children with certain types of brain cancer. The two approved drugs, Tafinlar (dabrafenib) and Mekinist (trametinib), created and manufactured by pharmaceutical company, Novartis , were authorized to be used in combination in first-line treatment of low-grade glioma (LGG) with a BRAF V600E mutation in kids one year and up. This came after the TADPOLE trial showed an overall response rate of 47% and median progression-free survival of 20.1 months for the Tafinlar + Mekinist combination compared to 11% overall response rate and 7.4 months for standard of care, according to Novartis .

It is important to note that until last week, there had never been any drugs approved specifically for use in children battling pediatric brain cancer. The additional approval of the two drugs in liquid form is another win, as it provides an accessible option to patients as young as one year old. Dr. Brian Rood , Director, Clinical Neuro-Oncology, Medical Director, Brain Tumor Institute, and LBF Scientific advisor, said in a statement, “Over the past several years, the promise of molecularly targeted therapy has begun to be realized in the treatment of BRAF-altered pediatric low-grade glioma. The FDA approval of Dabrafenib and Trametinib for a subset of LGG represents a milestone in the advancement of treatment for these tumors, one that we hope will be just the first for these types of drugs for pediatric brain tumor therapy.”

While this milestone is historic and shows the progress being made for our smallest warriors battling the deadliest disease in children, there is still more work to do. The Lilabean Foundation for Pediatric Brain Cancer Research (LBF) is proud to support collaborative research efforts for all types of childhood brain cancer. While LBF is hopeful that this is the beginning of many breakthroughs in the pediatric brain cancer space, it is important to note that there are many different types of brain cancer that affect children and over 100 subtypes. Certain brain cancers, such as Diffuse Intrinsic Pontine Glioma (DIPG), Glioblastoma Multiforme (GBM), and others, still have no cure and are fatal to 99% of children diagnosed. We celebrate this milestone but understand there is still more work to do.

The approval of these drugs offers hope for a future where there are treatment options and personalized medicine for ALL children diagnosed with pediatric brain cancer. Founder and Executive Director Nicole Giroux said in a statement, “The recent approval by the FDA of Tafinlar + Mekinist shows that we, as a pediatric brain cancer community, are making strides towards our common goal of safer and more effective treatment options. For 12 years, LBF has been dedicated to evaluating research and clinical trials for childhood brain cancer. This FDA approval gets us one step closer to not just saving lives but to giving our children a chance to both survive AND thrive.”

ABC7 News Sits Down with LBF to Shed Light on Importance of Pediatric Brain Cancer Research

Thu, 01 Dec 2022 19:46:45 GMT

Last week LBF Executive Director, Nicole Giroux, sat down with Alison Starling and Michelle Marsh to discuss the work the Lilabean Foundation is doing to make progress for children battle pediatric brain cancer. If you couldn't tune in live, we're excited to share the segment! Thank you to 7News DC for shedding light on this important cause!

The 2022 LBF Fall Ball Raises over Half a Million Dollars to Further Research

Mon, 14 Nov 2022 20:02:16 GMT

On Saturday, November 5th the Lilabean Foundation celebrated the 11th Annual Fall Ball! This year’s theme was Purpose. Passion. Progress. The event featured a sell out crowd with over 425 attendees, both in-person or virtually, and LBF is thrilled to announce that, thanks to all who supported the event, we raised over $500,000! These funds will support the efforts of doctors and researchers who are working diligently to find safe and effective treatments for children who are battling pediatric brain cancer. We know there is not enough time for these kids, and these funds will help to make progress NOW.

This year’s in-person event featured a HERO Wall Sponsored by our friends at Peraton . This was an interactive Wall that featured 13 of the LBF Heroes and shared their stories and firsthand battle with pediatric brain cancer. The event also featured an incredible Keynote Speech from Dr. Jay Storm, Co-Executive Director; Chief, Division of Neurosurgery, Center for Data Driven Discovery in Biomedicine at CHOP.

Our friends at Katten sponsored the Jack Preston Purssord Courage award which was presented to 12-year-old Max Pound. We were honored to be joined by Max’s Mom, Carol as well as his siblings. The program wrapped up with the premiere of the 11 Year LBF Video .

We are so grateful for the overwhelming support of our sponsors, attendees, and anyone who supported the event. LBF remains committed to continuing to fund important research which will uncover better treatment options and outcomes for children with brain cancer. You can check out and there is still time to make a donation to the event to support pediatric brain cancer research here .

A Mid-Year Reflection from our Founder

Tue, 02 Aug 2022 20:09:44 GMT

Those of us who have had the privilege of spending time at a children's hospital know and understand things that many people do not. We have had the opportunity to see both pain and suffering but also hope and healing. We have been given the opportunity to see life through a different lens.

As I sit in the atrium of Children’s National Hospital while Lila is participating in a clinical study, I am reflecting on the past 13 years over which we have spent a lot of time here. It is so familiar. Like a second home. I see faces that I recognize– the woman at the front desk, the cafeteria worker, the doctor walking down the hall. I see nurses and doctors who I can’t exactly place, but I know they have been a part of our journey. Maybe it is an ENT tech, an anesthesiologist from the OR or MRI, or a nurse from one of many clinics we frequent.

I am filled with gratitude for this place and for all who work here- from top to bottom. I am grateful for their care for our family and for countless other families. And Children’s National is just one children’s hospital, in one city, in one place that works relentlessly to provide hope for children and their families.

I am also incredibly grateful for the opportunity to serve the brain cancer community through the Lilabean Foundation. I am grateful that my daughter is a living example of the need to move the needle quickly towards finding better treatment options for kids with brain cancer.

While sitting here today, I had the privilege of running into and visiting with Lila’s neurosurgeon (who, by the way, is one of our heroes). He told me about a 3-year old girl who is up on the 4th floor who was diagnosed with an aggressive tumor last week. A tumor which was resected 7 days ago and has already grown back along with hydrocephalus which will require a shunt. She needs time. She needs options. She needs action and advancements.

And that is what I am committed to. That is what LBF is committed to. Action. Progress. Advancement. In 2022 alone, LBF has granted over $400,000 to support research which we are confident will positively affect the future for kids diagnosed with brain cancer. Research which will support and inform a faster, more precise diagnosis that quickly leads to a personalized treatment plan with predicted outcomes.

After my conversation with Lila’s neurosurgeon, he rushed off to meet with a family and left his surgical hat on the table in front of me. It struck me as a symbol and a reminder of the relentless passion and dedication of ALL of the people who work here. I have one request- when you are having a bad day, please think about the girl on the 4th floor or one of the thousands of other children in hospitals this summer. I promise that the lens with which you are seeing your problems will change your focus. For the better.

It is a privilege to work on the behalf of LBF’s community of families, patients and donors. Thank you for supporting our work. Wishing everyone a wonderful remainder of summer!

Following Her Lead: A Mother’s Journey through Pediatric Brain Cancer

Fri, 15 Jul 2022 20:38:32 GMT

Late on a Wednesday night, in the radiology suite of Children's Hospital, a kind and gentle radiologist told us that our daughter had a brain tumor. We didn't know yet what it would mean for her future but my husband and I are both doctors and we understood immediately the wide breadth of possibilities that our daughter's future could hold. As we went to the ER and then up to the Pediatric Intensive Care Unit for one of the longest and hardest nights of our lives, we worried about so many things. And yet, in that night and in the days and weeks that followed, we also were fortunate that there were things we didn't have to worry about -- realities that unfortunately impact so many other families walking this path alongside us. We didn't worry about whether we could take time off of work and still keep our jobs, or whether we could afford the medical care she would need (thanks to good health insurance). We didn't worry about how we would travel from a rural area to a major medical center to be able to access the specialty care she needs. We didn't worry about whether a medical language interpreter would be able to help us understand our daughter's treatment options and communicate our needs in a language different from that of our medical team.

Our daughter, Maddie, is a person who cares deeply about injustice and unfairness in the world around her. She looks around and she notices things in the oncology clinic and the hospital that make the impossibly difficult experience of being a child with brain cancer (or caring for a child with brain cancer) even harder for some families.

I have had the opportunity in my work on the Lilabean Foundation board to sit in on the Children's Brain Tumor Network (CBTN) committee focused on Diversity, Equity & Inclusion in the care of kids with pediatric brain cancer. One of their current projects is to increase access to translated clinical trial consent forms, information sheets, and instructions, so that more families will have access to the forms and instructions they need in the language they speak. This will allow more families to fully understand the options and care, and increase access to clinical trials that offer potentially lifesaving or life-changing treatment.

To honor Maddie and her desire to make the world a little more just for other children, we are delighted that the Lilabean Foundation is partnering with us so that all donations from Maddie's hero page will support the work of the CBTN DEI team to increase access to language translated forms for more children and families.

As with all things on this journey, we are following Maddie's lead. We are grateful to so many people who walk alongside us to support her vision for a different future for kids with pediatric brain cancer. Our hero is brave and bold and kind and cares deeply about the world around her, and we are honored to follow her lead.

LBF Supports New Position at the Brain Tumor Institute at Children’s National Hospital

Thu, 14 Jul 2022 20:49:59 GMT

LBF has made a three-year, $480,000 commitment to fund the DMG/DIPG Research Lab Program Manager Position at Children’s National Hospital in Washington, D.C. to continue progress towards a cure.

The Lilabean Foundation believes that it is the researchers and scientists who are instrumental in creating real progress in the fight against pediatric brain cancer, but between caring for patients, managing multiple research projects, working to publish findings, managing their teams, and so much more, these researchers are often stretched thin. Children are dying from brain cancer, and these researchers understand there is truly no time to waste. For this reason, the Lilabean Foundation is thrilled to announce a three-year, $480,000 pledge to Children’s National Hospital to support a dedicated Lab Program Manager for the DMG/DIPG Lab within its Brain Tumor Institute.

Over the past three years, Javad Nazarian, Ph.D., M.Sc., scientific director of the Brain Tumor Institute at Children’s National Hospital, and his team have quickly amplified their important research efforts in search of a cure. Part of this amplification is an international DMG/DIPG Translational Research Program out of Dr. Nazarian’s lab in Zurich, Switzerland. Their standard for DMG/DIPG global integration and access has come to be used as a model for difficult-to-treat brain tumors as they lead the way and exemplify the importance and success of collaboration.

This mission has continued to expand through establishing the Diffuse Midline Glioma-Adaptive Combinatory Trial (DMG-ACT) which is a working group of 18 international institutions. These institutions utilize their individual strengths to expedite pre-clinical processes and advance the right drugs to clinic in record time. This group has generated data to support two new clinical trials in less than 36 months which is a rare feat in this space. But with this incredible progress and momentum comes more strain on Dr. Nazarian and his current team. As the research initiatives grow in meaningful ways, so must program infrastructure to ensure maximum productivity.

For this reason, the new Lab Program manager at Children’s National will be instrumental in allowing the labs to continue to accelerate momentum to find effective treatments. This position will focus on maximizing research opportunities, activity and collaborations within the program, help with vital administrative tasks such as grant applications, increasing journal article acceptance rates and more. Lilabean is honored to continue to support the research and the individuals who are vital in helping us progress towards a cure for the deadliest types of pediatric brain tumors. Check out the clip from Dr. Javad Nazarian discussing the need and his gratitude to this community.

First Ever LBF Giving Circle Helps to Fund CBTN Pre-Clinical Model Program with $20,000 Gift

Wed, 22 Jun 2022 20:57:13 GMT

Helen Keller once said “Alone we can do so little. Together we can do so much.” The Lilabean Foundation for Pediatric Brain Cancer Research (LBF) decided to take this advice and create one of the first giving circles in the pediatric brain cancer sector. Over the course of three months, a group of 15 supporters came together in a virtual setting each month to learn about the landscape of pediatric brain cancer and pooled their pledged funds to select a research project in alignment with LBF’s mission of finding more effective, safer treatments for childhood brain cancer. These 15 supporters pledged $1,100 or more that would go to one of two projects that would be presented by the lead researcher and the group would then vote on specific criteria including Reach & Impact, Innovation, Collaboration, Transparency, and Challenges.

In addition to hearing from the project researchers, the group had the opportunity to hear from experts in pediatric cancer, philanthropy, family members and more. Speakers included Dr. Brian Rood, Director of Clinical Neuro-Oncology at Children’s National, Anne Wintroub, Founder of Upside, expert in CSR and an impassioned connector of people and ideas, Dr. Samuel Blackman, Co-founder & CMO of Day One Biopharmaceuticals , and Dr. Cassie Kline, Director of clinical research in the department of Neuro-Oncology at CHOP . During the second session, the Giving Circle cohort heard presentations from Dr. Jessica Foster and Dr. Mateusz Koptyra of Children’s Brain Tumor Network (CBTN) on two projects. Before this, our partners at CBTN put together two very informative videos for the cohort to watch that gave an overview of the projects, but the real-time discussion with researchers allowed everyone in the group to dig deeper and ask questions about these projects. Both researchers and the projects they presented were very impressive and actively working to continue progress and make advances for pediatric brain cancer. While the vote was close, the group chose to pool their dollars to fund the CBTN Clinical Model Program which aims to better understand how animal models progress the discovery of effective treatments. Lead researcher Mateusz Koptyra said after the announcement of the Giving Circle funding “I would like to express my sincere gratitude for the recognition and support that the Lilabean Foundation Giving Circle has provided me through this award. The financial assistance you've granted to my team will be of great help to us in our effort to develop quality models for pediatric brain tumor research. This award is an affirmation of the importance of our work toward the development of new clinical trials critically needed for children who are bravely fighting the battle with brain tumors. I assure you that the spirit of this award will be the cornerstone in our search for a better future for those kids. This gift will allow us to invest in equipment and support molecular characterization of our organoid models to ultimately use them in therapeutics testing. We will do our best to embody the mission that both of our organizations represent: to provide breakthroughs for every child every time, everywhere.”

The Lilabean Foundation was thrilled to gift $20,000 through our first giving circle and know that it will help to move the needle forward in an extremely important area of research with far-reaching impact. In addition to that, creating a space where supporters and those interested in making an impact in the fight against pediatric cancer could come together and support in a new and involved way was an incredible experience. One Giving Circle participant, April FitzGerald said about her Giving Circle experience “Our family has appreciated the opportunity to be part of the first LBF Giving Circle. The idea of collaborative giving is innovative and energizing! Raising funds for brain tumor research is is an enormous feat - it can feel too big to do alone and too broad to know where to best channel the funds BUT coming together with other members of the Giving Circle allowed us to feed off the energy of others who also had the shared goal of funding a specific clinical trial.”

The 5th Annual LBF Birdies for Brain Cancer Raises Over $190,000

Thu, 26 May 2022 02:28:11 GMT

Last Thursday, May 19th the sun was shining, birds were chirping, and Argyle Country Club was filling up with a full field of golfers , ready to take on the 5th annual LBF Birdies for Brain Cancer Golf Tournament to support pediatric brain cancer research. Many were rocking their gray in solidarity with LBF’s #GoGrayInMay gray out day. After months of planning and hard work from the incredible Golf Tournament Committee and LBF staff and volunteers, everything was set and ready.

The event kicked off with a brief program that featured founder and executive director, Nicole Giroux , followed by a heartfelt address from CEO of the Presenting Sponsor Star Sales , Steve Serowik. The group then heard from the Associate Chief of Oncology at Children’s National Hospital Dr. Eugene Hwang, followed by Andy Corno, father of a three- year-old Cameron Corno, the 2021 Courage Award winner, who arguably stole the show with her pink #CamStrong Headband and mini-golf club. It was a moving program that reminded all the golfers that while this event is a fun time, it is more importantly making a huge difference and helping to fund research for pediatric brain cancer. With that, the golfers were off to play 18 holes with opportunities to purchase raffle tickets, utilize the ball launcher on the 3rd hole and enjoy a delicious lunch from our friends at Five Guys!

In addition to the golf tournament, LBF was thrilled to host a new element of this event with our first ever women’s round robin tennis tournament. With 20 ladies joining us for this first-ever tournament, they brought the heat and had a blast while doing it!

There is more urgency in this work than ever before- with approximately 15,000 children in the US living with a brain tumor and many who will lose their battle within 9-12 months after diagnosis. We are at a critical moment in the development of new, more effective, safer therapies for children. This event, and the impact made, would not have been possible without all of our incredible sponsors, because of all of you, we raised a record amount that will support cutting edge research for children battling pediatric brain cancer, which is more important than ever.

A special thanks to our golf committee members Nick DeSarno, Sean Keegan, Craig Lewis, Andy Corno, Craig Beamer, Scott Dutton, Todd Stone, and Kevin Rowe as well as Tracie Rolle and Kyley McGeeney for supporting the Round Robin Tennis Tournament!

Thank you to all of our sponsors!

Presenting Sponsor:

Star Sales Distributing

Mission Sponsor:

Rock Spring Contracting

Reception Sponsor:

Freedom Materials

Lab Equipment Sponsors:

HITT Contracting, L&W Supply & Rockfon

LBF Fellowship Fund Sponsors:

Clark Dietrich, FBM, Howard Insurance, REW

Golf Cart Sponsor:

Marino Ware

Cup Disc Sponsor:

Contemporary Electrical Services

Aim to End Brain Cancer Sponsor:

SeaGate Government Solutions

Scorecard Sponsor:

National Technology Integrators

Beverage Cart Sponsor:

Potomac Mechanical Contractors

Putting Green Sponsor:

United Rentals

Koozie Sponsor:

Merrill, A Bank of America Company,

The DLR Group

Bag Drop Sponsor:

Capitol Building Supply

Lunch Sponsor:

Five Guys Burgers and Fries

Hero Sponsors:

Bethesda Contracting, Cushman & Wakefield, First

Home Mortgage-Tim Whittier, Jack Stone Signs,

Jessica & Pat Flynn, JLL, Jody & Brendan Tuohey,

MBA, Moira and Bob McCarthy, Secure Government

Technologies, Sunbelt Rentals, TEKSystems

Hole Sponsors:

Atlantic Hardware Supply, Flynn Architectural

Finishes, Hodge, Hart & Schleifer, KVS Title,

Tenant Agency, Tom Wagner & Associates, Weaver

Eckel Team of Compass, Worch Capital LLC.

Q&A with LBF Hero, Zoe FitzGerald

Tue, 19 Apr 2022 02:49:43 GMT

We are so excited to have had the opportunity to virtually sit down with our April LBF Hero, Zoe Fitzgerald, for a Q&A. A reminder that you can read all about her cancer journey, written by Zoe herself, here but read the Q&A below for even more info on just why Zoe is so clearly a Hero to so many and already making an impact for other kids diagnosed with brain cancer.

Q: You have mentioned that until recently you were very private about your cancer journey, can you let us know what made you change that?

A: What helped me to be able to open up more about my journey was coming to terms that a brain tumor is so much bigger than just my struggles, and I know that my healthy condition while having a brain tumor, I knew I could use my position to help others

Q: How do you think your diagnosis has affected your life?

A: I think my diagnosis has made me more aware and given me a perspective that I wouldn’t have had otherwise, I have a clearer understanding of the effects of childhood cancer and can more easily empathize with others struggling with illness. I have made some amazing friends that I wouldn’t have even met if not for my diagnosis.

Q: In addition to LBF, how have you been advocating and raising funds and awareness around pediatric brain cancer?

A: Last summer I started a non profit organization called Books4Brains to raise money for brain tumor research! It was a read-a-thon during the month of May (Brain tumor awareness month) and people were able to donate funds which went to children’s hospital pediatric brain tumor research.

Q: What do you think is important to help the next generation of children diagnosed with Pediatric brain cancer?

A: I think continued research and new treatments being made is so important, because there are so many children who either don’t have treatment options or their medicine can be toxic/harmful to their body.

Q: What advice would you have for a child diagnosed with pediatric brain cancer today as a child who has gone through this?

A: I think one piece of advice would be to let yourself feel all your emotions; it's okay to feel sad and not okay, it’s important to let your emotions out.

Proteogenomics in Low-Grade Glioma Project Update

Wed, 06 Apr 2022 02:57:14 GMT

You may remember that in the LBF 10 year Impact Report we updated you on a project about Proterogenomics in low grade gliomas. This is a project that LBF has donated over $150,000 to help support. Proteogenomics is a combination of genomics and proteomics in which genomic sequencing is used to create a database of all the possible proteins identified by a mass spectrometer (the main tool of proteomics) are searched against the database to help identify abnormal proteins that are unique to that gene.

“Low-grade Gliomas are increasingly being recognized as immunologically ‘hot’ tumors. This means that the immune system is dynamically involved in their micro-environment.” - Dr. Brian Rood, Medical Director, Brain Tumor Institute

We are excited to share that our friends at Children's Brain Tumor Network (CBTN) recently put out an updated publication on this project that is promising. Their data indicates that aberrant splice junctions are the primary source of neoantigens in medulloblastoma, a common pediatric brain tumor. These findings demonstrate the proteogenomic discovery of immunogenic tumor-specific peptides and lay the groundwork for personalized targeted T cell therapies for children with brain tumors. You can find the abstract here and can access the publication through the link below.

Lilabean Foundation Commits $650,000 to Children’s Brain Tumor Network to Advance Precision Research

Wed, 02 Mar 2022 03:17:54 GMT

The Lilabean Foundation’s support will accelerate the pace of translational research and the discovery of new treatments for children and young adults with brain tumors.

Since 2012, the Lilabean Foundation for Pediatric Brain Cancer Research (LBF) has had one goal: to eradicate childhood brain cancer through collaboration and raising awareness of the urgent need for research. Even with this deadly disease affecting over 4,000 children annually, there has never been a drug developed to specifically treat pediatric brain cancer.

The Lilabean Foundation has made a three-year, $650,000 commitment to Children’s Hospital of Philadelphia (CHOP) . This will support “Project Accelerate,” a program within the Children’s Brain Tumor Network (CBTN) , to advance the pace of translational research and the discoveries of new treatments for children and young adults with brain tumors.

The CBTN began in 2013 as only four member sites devoted to data sharing. Today, it is a global consortium of 28 institutions throughout Europe, Asia, Australia, and the U.S. Together, they are establishing a new standard of care for patients by sharing data, resources, and expertise to accelerate and improve discoveries. It is also important to note the support of foundation partners, such as LBF, to advance the CBTN’s mission illustrates an unwavering commitment to a brighter future for all children. For nearly a decade, this commitment has fueled significant research progress and provided new hope for young patients. And through a continuation of these partnerships, the CBTN will maintain its trajectory toward life-changing clinical impact. Collectively, the consortium has created the first – and now largest – clinically annotated biorepository with real-time query abilities with the opportunity to unlock and analyze specimens to understand their molecular structures. However, the windfall of data has posed a capacity challenge.

The $650,000 commitment from the Lilabean Foundation will allow CBTN to hire more data engineers and bioinformaticians to increase its capacity to process and empower the data to be used for research worldwide. “This will be the first time that this much data about pediatric brain tumors will be available instantly to researchers and has the potential to ultimately change the landscape of pediatric brain tumor research and care and help find the answers for each child with a brain tumor,” said Adam Resnick, PhD, Co-Director of the Center for D3b at CHOP and Scientific Director of CBTN. “With the support of the Lilabean Foundation, we are one step closer in identifying new treatment strategies that lead to new clinical trials and ultimately cures for brain tumor patients.” The funding is complementary to the recent funding from the Childhood Cancer Data Initiative of the National Cancer Institute , part of the National Institutes of Health.

LBF is a CBTN Executive Council member and, to date, has funded more than $2 million for childhood brain cancer research over the span of 10 years. Based in Washington, DC, LBF was founded in 2012 by Nicole Giroux in honor of her daughter, Lila, who was diagnosed with a low-grade glioma at 15-months-old. Since her diagnosis, Lila – now 13 years old – has been on many different chemo regimens, and the Giroux family has seen firsthand the urgent need for research to inform safer treatment options

"We are honored to support Project Accelerate and the CBTN team as we work together towards safer, more effective treatments for children like my daughter, Lila,” said Nicole Giroux, Founder and Executive Director of LBF.

About the Lilabean Foundation for Pediatric Brain Cancer Research

The Lilabean Foundation for Pediatric Brain Cancer Research (LBF) seeks to fund critical childhood brain cancer research and help raise awareness of the severity of this fatal disease. Our hope is that LBF will have an extraordinary impact on the lives of the many beautiful children affected by this terrible disease.

About the Children’s Brain Tumor Network

The Children’s Brain Tumor Network (CBTN) is dedicated to driving innovative discovery, pioneering new treatments and accelerating open science to improve health for all children and young adults diagnosed with a brain tumor. By accelerating the pace of translational research and the discovery of new treatments, the CBTN is a global community with the shared goal to save children and young adults from brain tumors.

About Children’s Hospital of Philadelphia

A non-profit, charitable organization, Children's Hospital of Philadelphia was founded in 1855 as the nation's first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals, and pioneering major research initiatives, the 595-bed hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country. The institution has a well-established history of providing advanced pediatric care close to home through its CHOP Care Network , which includes more than 50 primary care practices, specialty care and surgical centers, urgent care centers, and community hospital alliances throughout Pennsylvania and New Jersey, as well as a new inpatient hospital with a dedicated pediatric emergency department in King of Prussia. In addition, its unique family-centered care and public service programs have brought Children's Hospital of Philadelphia recognition as a leading advocate for children and adolescents. For more information, visit http://www.chop.edu

Tommy McFly Interview with Andrew Kaczynski and Nicole Giroux

Sun, 21 Nov 2021 03:27:12 GMT

Interview with Sarah Lilly, LBF’S Director of Development and Communications

Tue, 02 Nov 2021 03:37:57 GMT

TELL US A LITTLE BIT ABOUT YOURSELF – AGE, SCHOOLS, HUSBAND AND DOGS, PROFESSIONAL BACKGROUND AND HOBBIES, ETC…

My name is Sarah, and I am passionate about seeking out opportunities to create positive change in the world. A little about me, I am originally from Takoma Park, MD, but I have been living in Austin, TX for the last 8 years where I met my husband, Jonathan (a local Austinite). We have three large pups, Wade, Cooper, and Remington, and we are all excited to be making the move to the DMV area this October! I love cooking, reading, being outdoors, exploring restaurants, cheering on DC sports teams, and finding live music with friends. In my professional life, I spent 6 years at the LIVESTRONG Foundation working to build out programming and events as well as supporting our event fundraisers and top donors. Most recently, I spent a year and a half at Notley, a social impact non-profit that bridges the gap between for-profit and non-profits to accelerate change. In addition to this, I have volunteered with some incredible organizations including Special Love Inc. for the last 15+ years, Ronald McDonald House of Central Texas, and Beyond the Grade. I am thrilled to be starting with the Lilabean Foundation and to be jumping back into the fight to find a cure for pediatric brain cancer, which has had a huge impact on my life.

WHAT IS YOUR CONNECTION TO CHILDHOOD BRAIN CANCER AND LBF?

My connection to cancer started just before I was born. In spring of 1991 my older sister, Becca, was diagnosed with a glioblastoma at the age of 11. Growing up, my life was different from a typical child. It involved lots of time spent at Children’s Hospital in DC, doing anything I could to support my sister and my family. Becca passed away in June of 1997, just before I turned 6. I do believe that my sister’s diagnosis has been the north star in my trajectory in the change I try to make in the world in making the lives of families affected by cancer easier in a multitude of ways.

WHAT DREW YOU TO WANT TO BE PART OF THE WORK LBF IS DOING?

I am a huge believer in kismet and I think this opportunity was always meant to be. I met Lila and Nicole Giroux over 10 years ago at one of the final Becca’s Run events, a run that we put on in memory of my sister for 15 years. I remember hearing about Lila’s diagnosis and the Giroux family and then I got to meet Nicole and Lila on the playground at St. Bernadette. In 2021 when Nicole and I reconnected, she told me that this was just after the week that Lila was diagnosed with brain cancer at Children’s Hospital. When they had gotten home and seen the tents being set up for Becca’s Run and decided to register for the event that morning. Ten years later, I joined the advisory council for the Lilabean Foundation and I was hooked. The mission is so aligned with my life’s passion and I am so looking forward to helping to fund new and promising trials to one day change the lives of children diagnosed with brain cancer and their families.

WHAT PROGRESS DO YOU SEE BETWEEN NOW AND WHEN BECCA WAS DIAGNOSED IN 1991?

Unfortunately, since my sister Becca was diagnosed in 1991 – at the age of 11 – there has been little-to-no improvement in how we treat brain cancer in kids and that’s why the work that The Lilabean Foundation does is so critical.

WHAT IMPACT DO YOU HOPE TO MAKE FOR KIDS WITH BRAIN CANCER WHILE AT LBF? WHAT GOALS DO YOU HAVE IN YOUR NEW POSITION?

While it is a big goal, I hope to raise critical dollars to fund a cure for pediatric brain cancer. I think there are so many incredible things happening in clinical trials and on the science-side and we want to be there to support those trials if they get us closer to a cure. I am also hopeful that while we are tackling that goal we will continue to support this community through sharing stories which are so important to paint the picture of the effect that a brain cancer diagnosis has on the whole family.

AS LBF CELEBRATES ITS 10TH ANNIVERSARY, WHAT DO YOU HOPE LBF CAN ACCOMPLISH IN THE NEXT 10 YEARS?

Wow! I cannot believe LBF is already celebrating it’s 10 year anniversary and reflecting on the incredible impact it has already made. I also look forward to the next 10 years and I think we are excited to build our LBF community with new community partners who are passionate about making a change for children who are facing a brain cancer diagnosis, through storytelling, as well as finding new and exciting ways for our existing community to jump in and support the cause. These individuals and organizations have been our cheerleaders, our army of change makers, and we are so excited to have them continue to rally around us over the next 10 years.

ANY OTHER INFO YOU WOULD LIKE TO SHARE?

I am so honored to have the opportunity to do this work alongside so many incredible people who have been supporting this work. I am ready to roll up my sleeves and fight to make a change for the children and the families who will hear that their child has brain cancer. Together, I know we can make a difference.