October 26, 1988–May 22, 2019
From Ryan’s mom:
This was Ryan:
Ryan was a very giving person.
Ryan rescued his high school friend a few years ago when he offered him our home.
If it was cold, hot or rainy and someone Ryan knew was walking down the street he would stop and take them where they were heading.
Ryan encouraged a woman to remain clean from drugs and changed her life.
Ryan was a huge supporter of his younger brother Kyle who has Phelan-McDermid Syndrome, an Autism Spectrum Disorder. Ryan spoke about his brother Kyle to everyone who would listen and ordered t-shirts supporting the foundation. He would take Kyle on drives when Don and I were stressed. Ryan liked to take Kyle fishing. He would have a way of soothing his little brother when we couldn’t.
Ryan was a huge supporter of donor registry. He encouraged everyone to be an organ and tissue donor to help save a life. Ryan has a license plate holder, magnets and key chain and Ryan proudly displayed one on his car.
Ryan was such a good friend to everyone. You could tell him anything and he would not tell your secret.
Ryan wanted to be an organ donor but because of complications from KIF1A the only thing which was viable to be donated was his brain. Ryan’s brain was donated to Dr. Wendy Chung for KIF1A research. Ryan would be very proud to know he has made a difference in tissue and organ donation. If you read this, will you talk to family and choose to donate the brain of your loved one with a rare disease? Will you become and organ and tissue donor? You can save a life after you are done with your organs. As Ryan would say, “I got this mom.”
Ryan you are eternally missed.
I love you so very much every single day of my life. I hear your voice in my head; you make me smile to remember but then I cry because I desperately miss you.
Keep watching over us.
Make a Gift
We honor Ryan’s memory by continuing our relentless mission to find a cure for KIF1A Associated Neurological Disorder. Gene therapy and drug development are within reach, but there are two things preventing us from finding that cure: time and money. You can make a gift to support our mission in Ryan’s honor.