I just counted, I’ve had 2 brain surgeries, 1 spine surgery, 4 eye surgeries, lost my hearing and received an auditory brainstem implant all due to tumors on nerve tissue caused by Neurofibromatosis Type 2…and I’m one of the lucky ones. This debilitating disease directly affects 1 in 25,000 people which leaves it in research funding limbo, not common enough for most people to be aware yet common enough that the search for a cure ends with saving the lives of hundreds of thousands of people just like me.
Following a spinal surgery to have one of these tumors removed, I was unable to stand or walk. I remember asking the doctor if that function would return and he replied “it should”. Should. Uh…thanks? Over the next few months, I progressed with therapy from a wheelchair to a walker to a cane. I then made up my mind that I was going to celebrate my progress by running a marathon on the one-year anniversary of that surgery while raising some money and awareness for NF at the same time. That was a few marathons, half marathons, triathlons ago but since there still isn’t a cure, I guess I’ll have to keep lacing up my shoes.
When my daughter Maddie was 2 she said, “Daddy, maybe I’ll fix your ears for you.” It has been two years now and her neurosurgery skills haven’t improved so I am reaching out to you for help. On May 8th, my lovely wife Nora and I will be participating in the Indianapolis Half Marathon to again raise money for NF research in hope of finding improved treatment and a cure (assuming Maddie doesn’t have a breakthrough). I’d love it if you could help us in our efforts by donating toward this very personal cause of ours.
We will be a part of the Children’s Tumor Foundation (check out their video below) endurance team in Indy, it is a wonderfully organized group of people that share our common goal of finding an answer to NF. I want to end with a special thanks to all of you who have been such strong supporters of me, my family and this cause over the years. Your kindness and generosity never ceases to amaze me.
To learn more about NF at The Children's Tumor Foundation web site
CLICK HERE.
And to learn more about the Mighty NF Endurance Team and where we are funding research read "Team Fundraising Dollars at Work"
CLICK HERE.
Cheers!
Team Hay | 
