Meet Sam Leary Award Recipient, Whitney!

Author: NF Network, Whitney Scheibel

Published On: 02/15/2024

From the start of his life, Sam Leary needed several medical interventions. He was diagnosed with segmental NF1 at age 5. One leg was growing considerably longer than the other. That leg-length discrepancy, the presence of tumors, and other complications led to multiple hospital stays and multiple surgeries.  While Sam and and his mother Karen faced these challenges together, the two of them were also able to play a vital role on the front lines of the NF Network Advocacy Program, giving voices to thousands, and helping to raise millions of dollars in search of a cure for neurofibromatosis.  We are forever fortunate, and the world is a better place, for the bright mind and beautiful spirit of Sam Leary, who left us so young. You can read more about Sam’s story here.

In memory of Sam, the NF Network is proud to continue finding worthy candidates for the Sam Leary Advocacy Scholarship Fund. This program assists NF Advocates with their travel costs to Washington D.C. to continue the critical work that has been Karen and Sam’s passion. This year’s scholarship was awarded to NF1 advocate, Whitney Scheibel. There is no better way to describe Whitney’s passion and enthusiasm for this honor than in her own words. 

“This year, I was honored to receive the Sam O'Leary scholarship. Sam, who also had NF1 like me, sadly passed away in 2019 due to complications from sarcoma (caused by NF1). In memory of Sam's courageous battle with neurofibromatosis and his advocacy for NF research, Karen (his mother) and Sam wished for donations to be made in his honor to the NF Network. Each year someone will receive the scholarship to start their advocacy journey on the Hill. 

I was proud to be part of a group of about ninety individuals from the Neurofibromatosis Network who visited the offices of our country's senators, congressmen, and congresswomen to advocate for funding. As it's Rare Disease Month, we had the opportunity to educate policymakers about the impact of rare diseases on our lives or the lives of our loved ones. What made this experience particularly meaningful was engaging with dedicated individuals from both sides and urging them to collaborate on funding crucial research that directly impacts their constituents.

I’m glad I live in America where I have the privilege to have an opportunity like this. Not everyone is afforded opportunities like this. This journey reminded me of my profound gratitude for residing in a country where, despite its flaws, citizens can actively participate in the governmental process, advocate for their beliefs, and have their voices heard.

Each year in February, the NF Network Advocacy Program gathers on Capitol Hill in Washington, D.C. to advocate for continued federal funding for NF research through the Congressionally Directed Medical Research Program (CDMRP-NFRP). Since 1996, the NF Network and its partners have played a vital role in securing over $400 million in federal research dollars for neurofibromatosis research.

The funding is absolutely essential and critical to people with NF. NF research, not only benefits those with NF but can benefit ANYONE and EVERYONE. NF research can benefit the MILITARY as a model for advancing treatments for cancer, bone healing, nerve regeneration, brain injury, and other conditions. This research is absolutely essential and crucial! Because of NF's close connection to many common diseases and disorders, such as cancer, learning disabilities, heart disease, memory loss, and brain tumors, research on NF stands to benefit 175 MILLION Americans in this generation alone!! 

I stood up for those who couldn't be there in person and advocated for those and those without a voice. It was an incredibly empowering experience and the work isn’t done. It will never be done. There’s strength in numbers and I am happy to know that with each coming year, the number of advocates increase. I'm excited to return next year and continue this journey!”

Follow Whitney and more of her D.C. story here.