We did it! Our friend Tim and I paddled twenty miles around the coast of Gloucester, MA in The Blackburn Challenge. The Blackburn is named after a nineteenth century fisherman who paddled his dory sixty miles to land when he became separated from his vessel. Dave, Jean and Tim. He even purposefully froze his hands to the oars so he could keep on paddling. Check out www.blackburnchallenge.com for more if you’d like. Tim thinks, and I agree, that Blackburn is just like those of us fighting FA…loving life, staying strong, and not quitting despite a tough prognosis. While we paddled, my husband Dave was our crew. We couldn’t have done anything without him. In many ways, and I am not belittling my accomplishment, I was enabled by Tim and Dave.

Hi, my name is Tom, I'm 38 years old, and I was diagnosed with FA in 1997. I live independently in my own house, which is very important to me. I strive to do whatever I can to maintain some level of independence for as long as possible. Living alone at times can be very difficult. I find myself getting frustrated more easily because I routinely find different things that I either cannot do, or have more and more difficulty doing. It's almost as if I am continuously mourning the loss of different abilities. My constant struggle to maintain my independence can also be very difficult to friends and family members. I am very resistant to ask for, or accept, help. A lot of people around me get upset with me because they want to help, rather than watching me struggle with an otherwise easy task.

Staying active, to me, is a very important part of being able to stay independent. Staying active, doesn't necessarily have to involve exercise, but I think that is a huge part of it. I subscribe to the "If you don't use it you will lose it" rule, meaning if you have muscles that you don't use on a regular basis, they will gradually deteriorate, and eventually you won't have them to use. I work out at the gym four days a week, doing whatever I can. I also participate in physical therapy twice a week where I exercise my core muscles and walk, albeit for short distances. I also travel a lot, and participate in many social activities.

So how do you tell friends, family, and strangers about Friedreich's Ataxia? I think the answer is different for everyone, but I will tell you how I deal with this.

I will start with family. As I mentioned in my bio, I moved to Florida 7 years ago without family. We are all pretty spread across the US. My immediate family will ask how I am doing but we never go into much detail. They all have looked at the websites that give the facts about FA, but we do not discuss the "bad" stuff that may happen. So we briefly talk about how I am doing on our phone calls and move on to other subjects. I feel it keeps the family more positive because it is not discussed in depth, even though we all know the facts.

My name is Robbi Van Schoick and I am 33. I live in Athens, Georgia with my parents. My younger sister, Katie, lives in Atlanta with her husband. I am a proud aunt of two nieces.  I have had FA for most of my life--since age 6. Growing up, I chose to shelter myself from learning about my disease, and in fact, I had never met anyone else with FA until my middle sister Becca was diagnosed at age 12.

I am a native Texan, and my family moved a fair amount, due to my dad's job in pharmaceuticals for animal health. I really like living in Athens, home of the University of Georgia.

I received both my bachelors in psychology and masters in public health at UGA, and I am still involved there. Specifically, I volunteer as a co-teacher of a seminar on communication with people with disabilities, which is right up my alley. I teach with a professor in kinesiology, a subject I do not pretend to know a thing about. I really enjoy our class, and since we do some of the grading online, it is easy for me to engage. I teach only in the fall and *never* before noon!