Fluffhead was a man with a horrible disease,
                                      Could not find a cure,
                          Would YOU help him if you please?"

The above quotation is from a line in one of my favorite songs by the band, Phish.  This quotation is also very relevant to my life.

My name is Jonathan Zilles; I was diagnosed with a rare neuromuscular disorder called Friedreich's Ataxia (FA) at the age of 11.  FA is a progressive neuromuscular disorder that, along with over 40 other neuromuscular conditions, is supported by the Muscular Dystrophy Association (MDA). When I was first diagnosed with FA I did not understand what it meant and therefore it didn't bother me. Not until the age of 13 were my symptoms really noticeable to me and my friends.  I would deny any rumors that would start as to why I walked different. I was fortunate enough to have a normal childhood, but many with FA are diagnosed at a much younger age.

I am 30 now and living on my own with tremendous help from my loving parents and personal attendants.  Fortunately, FA does not affect mental capacity so after high school I was able to get a BA in psychology from Auburn University.  Because FA causes severe fatigue it is too difficult to hold down a full time job. I enjoy listening to music and spend majority of my time on the computer.

On April 22, 2010 MDA in association with Seek-A-Miracle (SAM) and my parents, David and Linda Zilles will host the 2010 Reach for a Cure Wine Tasting at The Westin Perimeter North Hotel in Atlanta GA- Perimeter. This evening supporting Friedreich's Ataxia research will include a wine tasting, a silent auction, and a great social event.

Your donation, large or small, will help fight this terrible illness. Doctors have acquired most of the knowledge needed to develop a treatment; they just lack the funds necessary to complete their research. Through your generous donations, you will help bring about a new era of exciting advanced research to fight against this devastating disease. Along with the MDA, I would like to ask for your support to find a cure for this "horrible disease".    

Thank You for taking the time to read my letter and please consider helping this wonderful cause


Jon Zilles