Remembering Sam

Author: NF Network, Karen Gunsul
Published On: 12/18/2019

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:

"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.

Remarkably, Sam never suffered the nausea or other side affects common to chemo and continued to enjoy three meals a day provided by his favorite chefs – Alex and me. He became less and less mobile as time progressed, but, even on his last day, he stayed lucid and alert. On that Sunday, after his dinner, he and I had a great talk as he drifted off to sleep…about an hour later we heard a deep sigh. When we checked in on him, he was gone, peacefully in his sleep. Although we miss him – and will continue to miss him – we could not have designed a better way for him to go.

This is the last candid photo I took of Sam in Bellingham on September 18th… It looks like him in the last days of his too-short life. He is happy, looking forward and that is how he would like to be remembered.

Sam traveled to Italy with us for a couple of weeks in the Fall of 2014 – it was one of the highlights of his life and helped him understand that having to use crutches should not stop him from doing whatever he wanted to do.

Sam was in the process of completing a degree in Computer Science and Japanese language at Western Washington University. In fact, during a break from chemotherapy, he returned to campus for classes for four weeks. Unfortunately, his Sarcoma came back with a vengeance and he declined rapidly. After Sam completed another round of chemotherapy, we were told that his cancer could not be cured.

He will be remembered fondly by his family – Gunsuls, Learys , and Bennetts – in Washington, Oregon, California, Montana, and New Mexico."


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.

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