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

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.