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.

Held at World of Beer in Arlington, VA on Sunday, July 14, 2013 was the kick off party to what will be a continuous benefit for FARA.**

I rode with Tom and Cindy Trovinger to World of Beer, where we met Ron and Raychel Barteck, John Cernosek and his sister, Laura, and lots of other FAmily and friends. New to our FAmily is Megan. This was her very first time meeting anyone with FA and we can all remember how scary that is, especially because everyone else was more progressed than she was! Kudos to her for taking the plunge! She was very nice and friendly! Smart too! And she definitely has the good looking genes that come with FA. ;-) Total package and a great new addition to our FAmily!

World of Beer has way too many beers to choose from, the menu was a book! I would have taken quite a while to decide which to try, but they had very conveniently chosen PALM beer as the beer to drink. In addition to the kickoff party, 10% of Palm beer sales will go to FARA! I liked the beer very much. Not strong, but not too lite either! A good medium! There was also some really great live music and a silent auction. I was the only one to bid on the women's PALM tank so I am happy to say that I won!

I live by myself on the 14th floor in a studio apartment in downtown Silver Spring, a city next to Washington DC. I don't have a normal job. I'm not independently wealthy at the moment. I'm working on it.

I could be called obsessive with my workouts. It comes from, in part, being obsessed with sports as a kid. The other part is knowing how important to my health exercise is. Monday-Wednesday-Friday I go to the gym and either swim laps or walk on the treadmill. I do stretches and yoga poses and miscellaneous exercises most days. So passionate am I that I became certified as a personal trainer, and I'm currently studying nutrition.

The Maryland Youth Leadership Forum (YLF) prepares a select group of 30 high school juniors and seniors with various disabilities for an independent, hard working adult life. This past week YLF held its annual three-night camp at Towson University, near Baltimore, full of leadership activities and guest speakers and teachers all with disabilities. The program is sponsored by Independence Now, the Center for Independent Living I used to work for. I was invited to be a group co-facilitator for the week. The following is my experience at the 2013 YLF camp.

I arrived at Tubman Hall in the West Common Village of the suburban university on Tuesday morning. The six co-facilitators and eight co-counselors had a staff meeting where we received our binders containing the packed itinerary for the week and our official, black, staff t-shirts. This dormitory was built two years ago and every room had amenities like a fully accessible bathroom, fridge and microwave.

At 11 I headed downstairs to welcome the YLF Delegates, as they were called, and led a herd of kids, many of whom were away from home for the first time, through the quad to the ballroom where they received their binders full of activity sheets we would be working on throughout the week, and their red, gray or blue shirts signifying their group. I had The gray group, an especially chatty bunch.