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Dear friends,

I plan to run 26.2 miles in the Detroit Free Press Marathon on Sunday, Oct. 21, 2012. My goal is to further awareness of Neurofibromatosis (NF) and to raise funds for research.

My brother, Greg Barnier, has been affected by NF Type 2 since age 10 when an optic nerve tumor caused vision loss in one eye. At that time, 38 years ago, CT scans and MRIs did not exist, so surgeons were unable to find the tumor when they opened his head. Five years later, with the first CT scan machine available in Detroit, not only was the location of the growing tumor found, but another tumor was found on one of his hearing nerves that was pressing on his brain stem. Within four months both tumors were removed and Greg became deaf and blind on his left side. Finally his problem was identified and it had a name – Von Recklinghausen’s Disease, later defined as Neurofibromatosis. Two months later he was back up on his 8 foot unicycle riding over cobblestone streets in Europe, parading and performing with his unicycle club. He even realized his dream of hiking in the Alps. I was there too!!

NF2 is a genetic disorder that causes mostly non-cancerous but often life-threatening tumors of the nervous system – the brain, spinal cord, and nerves anywhere. It is estimated to affect one in every 25,000 people worldwide. The faulty gene can be inherited from a parent with NF2, or it can happen to someone with no family history of the disorder. There is no cure at this time, but researchers are approaching some effective therapies for some people.

Since this all began Greg has endured ten surgeries to remove brain tumors, and four to remove spinal cord tumors. Ten more brain tumors are presently being watched. Spinal tumors are too numerous to count but are causing no problems at this time. Eighteen years ago Greg became totally deaf as expected because tumors on both hearing nerves is the norm. Life without music, conversation, and the sounds of nature is a big loss.

Greg’s most recent surgery was last April, 2012, to remove a lime size brain tumor. Two months post-op he was swimming 50 lengths in his rec center pool. He also participates in spinning classes which involves intense riding on a stationary bike.  A Tai Ki class is improving balance since he has no functioning balance nerves. He follows a strict self-imposed exercise regimen in order to speed up recoveries from surgeries, and to be in shape for any upcoming surgeries. Our family is grateful for the highly skilled surgeons who have served him so well, and for the prayers and good wishes of many friends and relatives. As Greg’s younger sister I personally admire the courage and thoughtfulness he has always shown to those of us who are very close to him.

Thank you for reading this long story. And I thank you for any donation you may care to make to further NF2 research.

God’s blessings always,

Pamela Barnier Hughes

 

To learn more about NF visit: www.nfnetwork.org