It is that time of year again when Pik and I will be running the 10K in the Fifth Third River Bank Run in Grand Rapids on May 9, to support awareness and research for Neurofibromatosis Type 2 (NF2).
What is NF2? It’s a genetic disorder in which the tumor inhibitor protein Merlin is unable to be generated due to a mutation on chromosome 22, thus tumors are able to grow throughout the brain and spine-the central nervous system. It’s a very rare disorder affecting 1:30,000 births.
What does NF2 do that deserves support, awareness and me running a 10K?
I was diagnosed with NF2 when I was age 10 in 1974. Since, I’ve had 11 major surgeries, plus radiation surgery, multiple minor surgeries (which I don’t even count anymore) to remove tumors from the spinal column compressing the spinal cord, tumors in the brain, on hearing nerves, tumors on the skin and even behind the eye. The results have been profound deafness, blindness in one eye, loss of balance, foot drop and continued surgery from existing tumors that become too large, cause a serious threat and need to be removed. But, NF2 can also cause paralysis of extremities, swallowing paralysis, facial nerve damage, chronic pain and of course, loss of life.
For me and friends with NF2, many whose condition has developed more severe than mine, it is a life changing struggle that effects all aspects of life. The key to how we succeed in life is how we cope, plus coming together to lend support and risk our remaining health to find cures or options to slow, shrink or stop tumor growth.
So what do we do? Everything we can to push back when NF2 rears its ugly head and the world seems to crash in around us. We don’t take anything for granted. We find ways to overcome obstacles created by NF2, we struggle, we go through surgeries, and we keep pushing toward our goals in life as often as they may change. Some of us will run and fundraise as a way to push back. I have many friends with NF2 that can’t even walk, hear, see, eat food as many of you would on a daily basis without even thinking about it, but they are strong- and see their hope through research and a cure.
So I’m asking you to join the cause in supporting continued research for NF2. There are currently several drugs that are being tried with hopes of slowing tumor growth, and mice trials that are being conducted at the Massachusettes General Hospital NF2 research lab in Boston that show promising results. Because it’s rare, the recognition is less and so funding is less and NF2 keeps destroying. When will it stop? When will we find a cure?
Please help and join the fight against NF2. Your donations in whatever sum are greatly appreciated and will be used directly to support ongoing research to find a cure for NF2. Never give up! Please help my run count for others who can’t even walk
Offline donations: checks can be made payable to:
Neurofibromatosis, Inc. and sent to: P.O.Box 66884
Chicago, IL 60666 c/o Run4NF donation, Greg Barnier 10K River Bank Run
Thank you for your support!