A Mid-Year Reflection from our Founder

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!

Lobby table and chairs
Title text on dark blue: “Memories from a Hero’s Grandpa” by Jay Spitulnik
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August marks one year since we lost Kasey Vivian Zachmann. She was 10 years old. Over the course of four years, Kasey endured 10 surgeries, 45 proton radiation treatments, multiple rounds of chemotherapy, and two clinical trials, and through all of it, she never lost her smile. To mark this anniversary, we are honored to share a reflection written by Jay Spitulnik, Kasey's maternal grandfather. Jay's words carry the kind of love and clarity that only comes from someone who was there, someone who watched Kasey light up every room she entered, and who has spent the past year learning to carry both grief and pride in equal measure. The Kasey Zachmann Fund for Medulloblastoma Research was established in her honor to ensure her fight advances the science for every child who comes after her. We hope Jay's reflection touches your heart as it has ours.
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