I feel each day we hear of yet another breakthrough. We are coming closer and closer to the cure. As I wait, I do all I can to help FARA keep going by fundraising and raising awareness.

On Tuesday night, I had a "Flatbread & Fishermans fundraiser for FARA". Flatbread restaurant, which serves organic brickoven pizza, has a weekly charity night. A portion from the sale of pizza goes to FARA. A friend of mine donated a keg of "Fisherman's brew" which the entire proceeds from that sale also go to FARA. My uncles played some great tunes and my aunt belted out a few songs. I was rolling around from table to table checking out everyone’s pizza!

Throughout the night I saw a lot of family and friends, a lot of coworkers and neighbors, and a lot of other families affected by FA. As always it was a great time.

This is something I have been thinking of a lot lately. They are going to find a cure for FA. Of course, it can never be soon enough, but it will come. When they do I am going to be as ready as I can be emotionally, physically and spiritually. I eagerly anticipate a cure and try to do what I can to make it happen. I think it is going to be harder than I guess/anticipate.
For 30 years I have known I had a chronic disease. For twentyish years I have identified with and identified myself as a person with a physical disability. Chronic disease, disability, Jean Walsh [yes talking about myself in the third person ;)] are so inextricably intertwined right now. I am not my disease, but it is complicated. My sense of identity is, right now, married to chronic disease and disability. While disease and disability do not run my life, they are facts of my life. And to me, disease and disability have given me opportunities to be strong, pursue happiness and be giving that I might not have had otherwise. I feel like I am a better version of me because I have FA. Maybe I would be the resilient person I think I am now if I didn’t have FA ... something I’ll never know and is not, to me, worth much thought.

As my mom and I drove home from a recent fundraiser, I used my iPad to capture the day in words, and couldn't help but smile. I was filled with this overwhelming sense of pride and hope. The fundraiser luncheon at the Springfield, Virginia Outback on June 8th, 2013 was nothing short of amazing. The amount of support that FARA has from the community, as always, is unbelievable, and the drive and determination shown by FARA's staff is rarely ever matched.
This event was attended by all of FARA's six-person staff and board members. Apparently, there was a board meeting in the city of Springfield, so all the members were able to attend the fundraiser. This rarely, if ever, happens and I certainly have never been to a fundraiser where all of the FARA staff were present. They are routinely so busy being spread so thin attending other events, it is not unusual to see only one or two at each event. This a great problem to have, I think. It's a testimony to how many fundraisers there actually are. The more fundraisers, the bigger the chance of any treatment and a cure, and this gives me hope.

I have been living here about seven years now and grew up in Dayton, Ohio. I was not diagnosed with FA for 12 years from when I first started seeing Neurologists when I was 18. I have always been independent and moved out of my parents' house when I was 18 and worked two jobs. Therefore, my family never really went to any doctor appointments with me nor ask me many questions about them. Besides, at the time we mostly all lived in different states.

It all started with lack of balance and on to limping and so forth. Doctors had absolutely no idea what was wrong with me for nine years, this was after six neurologists! I was considered the "rebel" kid in my family...going to clubs, drinking at an early age, and part of the goth club scene. I LOVED dancing!! Lucky, being a club girl, most my friends sadly thought I was a drunk and I let them believe that. It was easier to say that I was drunk than to explain that I had no clue why my legs were deteriorating on me.

So I moved to Florida (where there is no snow and ice to fall on when I had a cane) and a Neurologist misdiagnosed me. It was another no cure, no treatment deal so I did not see another doctor for over three years. Then I went to the University of Cincinnati to meet a new neurologist and right away she guessed that I had Friedreich's Ataxia.