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. His mother, Karen Gunsul, continues to reflect Sam’s brilliant light back to us, touching our hearts, empowering our efforts, and embodying the priceless gift of hope.

On March 2, 1993, infant Sam was born and needed several medical interventions to start his life. When Sam was 5 years old, he was diagnosed with segmental NF1. 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 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.

In memory of Sam, the NF Network is proud to announce the Sam Leary Advocacy Scholarship Fund. This program will assist NF Advocates with their travel costs to Washington D.C. to continue the critical work that has been Karen and Sam’s passion.    

Here is a message about Sam that mom, Karen, would like to share:

Remembering Sam. . .

"I want to let you know that Sam, after being diagnosed with Sarcoma and nine months of treatment for that Cancer, died in our home on Sunday, November 24th.  Alex Bennett and I are grateful that he did not have any pain – other than the actual administration of the chemotherapy and ALL of the attendant tests required – and that we were able to provide for him here at home.

Sam Leary Advocacy Scholarship Fund 

In honor of Sam and his battle with neurofibromatosis and his advocacy work for NF research, it is Karen's and Sam’s wish that donations be made in his memory to the NF Network. The NF Network is proud to announce the Sam Leary Advocacy Scholarship Fund.