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.”
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.
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 .
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.”
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 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.
Meet our 2024 LBF Fellow, Jian Li, PhD
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.
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.
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.
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.
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.
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.
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.
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 .
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.
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.”
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!
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 .
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! 
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 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.
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.”
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!
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.
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
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.
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.