Last week FARA was notified of an opportunity to participate in a roundtable discussion about the US budget sequestration with Senator Bob Casey. Senator Casey has made it one of his top priorities to advocate for maximum National Institutes of Health (NIH) funding for medical research so that NIH funding does not suffer (as much) from the sequestration process.

Elected officials are approached on a daily basis with statistics and pretty graphs that illustrate trends supporting all kinds of issues. However we were told today that it is the stories from individuals that people remember and work wonders in Washington. To that end, Senator Casey and his staff held this roundtable discussion to collect stories of the individuals who will be affected by NIH budget cuts so he can use the stories when he is fighting for these issues in Washington.

Dear readers,

My first poem was one I wrote in kindergarten about fireflies. As an adult, I am still writing, although my subject matter has evolved beyond insects! I am truly in love with words and with weaving them together to create beauty, appreciation, poignancy, and depth. I do not write for myself; I find peace and value in sharing my love of words with others. Most of my poetry is about my family, and I have actually never previously written about FA. The experience, in itself, was beautiful, in that the words poured from me. Even though FA makes typing difficult, I will not stop sharing. Please enjoy!

Robbi

By Mary Vida

I had the pleasure to attend my first Friedreich’s Ataxia (FA) Woodstock a couple of weeks ago (July 17-20, 2013) at the Flying H Ranch in La Porte, Indiana, which is the Hook’s family property. The Hook FAmily is a pillar of the community.

Wonderful volunteers in the Hook’s community pitched in to help create an awesome environment that is geared towards having fun and just being yourself, despite the challenges of FA.

There were many activities to participate in: yoga, tie-dying t-shirts, fishing, mosaic tiling, swimming, socializing, card playing, music entertainment, firework display, launching of Chinese lanterns, Ice-Cream machine to make cones, and the meals were FAbulous.

My name is Richard Currier (Richie), I am 34 years old and I live in Winthrop, Massachusetts. Winthrop is a small, seaside town bordering Boston to the northeast. My father grew up there and my parents still live there. My mother is originally from Ireland.

I have a brother named Sean who is four years younger than I am. We have always been close. I'm quite proud of Sean, he's a Sailor in the United States Navy. Sean and I had the typical childhood and adolescence and we were always close growing up. My extended family also lives in Winthrop - my grandparents (on my Dad's side), aunts and uncles. I have many relatives in Ireland, too.

I was always active in sports as a kid. I particularly loved baseball, basketball and soccer. Most of my closest friends also participated in athletics and we had a lot of fun playing in games together and all the other typical kid stuff growing up.

By the time I was in my mid teens I found that, unlike earlier in my life, I couldn't quite perform in sports at the same level as my friends. The changes came on gradually but steadily and by the time I was a senior I found myself spending more time supporting my friends who were playing than actively participating myself.