The FA Project is committed towards creating awareness of Friedreich's Ataxia, a life altering disease. We aim to educate the public by increasing the visibility of related information & resources and creating a support system for those afflicted with FA. Ultimately it is our goal to provide those living with FA the tools and resources necessary to lead the best life possible.

Meet JadeMeet Jade

Jade Perry was one of the individuals who received a travel grant from The FA Project to attend the 2nd Annual FA Symposium held in Philadelphia this past November.

Here is Jade's Story:

I am from Carver, Massachusetts - a town known for two things: a renaissance faire and cranberries. I have always liked the small town feel and personal touch, but when I was in high school I dreamt of getting out of this safety net of familiarity. I just couldn't be that physically awkward girl that went to the nurse everyday to get out of gym class anymore. I couldn't be that girl that bumped into you in the hall way and caused you to spill your coffee. I couldn't be that girl who had to leave school by ambulance for heart problems. I also couldn't get though my graduation without being that girl who tripped on the way in AND out and had to have her shoe thrown back to her.

For a while there was debate over if there was anything wrong with me. After the fact, it all seems clear as day. I have never had reflexes, diagnosed with scoliosis at the age of 12, atrial fibrillation beginning at the age of 16, inverted T-waves, nystagmus and of course problems with balance and coordination. For a while there was debate over whether or not I had Marfan's Syndrome. The resolution did not come until a month into my freshman year or college when I called my mom panicking about the brain tumor that I had convinced myself I had. Soon after that she flew me home to see a neurologist, and after an MRI, our best guesses of a brain tumor and MS were ruled out. Along with a bunch of other blood tests, a genetic test was done. A month later,on the day before Thanksgiving, I was diagnosed with Friedreich's Ataxia. Needless to say, we were not so thankful that Thanksgiving.

FA affected my college decisions before I was even diagnosed. I knew I had problems walking that were exacerbated by the snow and ice. As a result, I did not apply to a single college north of the Mason-Dixon line. I actually chose to attend the northern most school that I applied to, Coastal Carolina University and have only seen one snow dusting in my three semesters here. The university has also been fantastic regarding accommodations.

Being the youngest child, I have always been the center of attention in my family. Now I am the center of attention for a reason that I never strived for. I have an older sister who sings and dances and has always tried to teach me her dance steps. By the time I was 14, she had given up hope of her sister ever being her back up dancer. Now we just laugh about it. My mom always tried to tell herself that I was just a clumsy kid. The first time I met my step-dad-to-be, he noticed my lumbering movements when I picked up a glass of water. He later asked my mom what was wrong with me (and 4 years pre-diagnosis she was not thrilled). But he certainly picked up on it way back then and has been supportive the whole time, helping when I need it. My mom has been my rock. She and I kept eachother strong through the beginning of my diagnosis and now I call her daily to tell her of my FA happenings, whether I am holding onto my blinds for dear life to avoid another fall or if I pushed a stranger into a wall when I lose my balance. But as great as most of 98% of my family has been with the diagnosis, there is always that one. That one is my father who I have not seen and have hardly spoken to since my diagnosis.

Jade and KatieLast May I received my wonderful service dog, Katie. Katie came from Service Dog Project Inc., a Massachusetts program that trains great danes for the balance impaired. Katie not only keeps me from falling on a daily basis but is also a wonderful icebreaker (whereas my cane had been a deterrent). Service Dog Project donate their dogs to the recipients. I would and have recommended SDP and service dogs in general to those with FA. Two other FAer's were so inspired by seeing the work that Katie does that they are receiving service dogs from SDP this winter.

I wanted to attend the symposium in Philly, not only to further educate myself, but also to meet other FAer's. I definately met both of those goals. From both the promising information I received and the wonderful people I met, I feel empowered. I feel like others out there know what I am going through and that we really are at the breaking point for effective treatment. I made permanent bonds with many people I met in Philadelphia and cannot thank you enough for giving me the opportunity to attend the symposium.