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3rd Annual 5k Mother's Day Race for Christina

Do you have a person in your life that you would do anything for? For some people it's a significant other, a parent, or teacher. For me, it is my 24 year old sister, Christina. I remember the day my parents told me that I was going to be a big sister. I was instantly obsessed with Christina. She became my best friend even before she was born.

Growing up, Christina and I were extremely close. We would never do something without the other sister being included. During the summer of her senior year of college, my family and I felt something was off with Christina's walking. We would just tease her that her one leg was longer than the other, however, after a huge fall, we knew it was something greater. The day we found out she was diagnosed with Friedrich's Ataxia, a life shortening neurological disease, I spent all night crying to my mother, "How will we get through this? How can I be strong for her? What can I do?"

Iowa City FA Conference

On Friday, May 1, 2015 FARA hosted it's first FA Conference in Iowa City. There were 14 individuals with FA and their families in attendance. Families traveled from several states in the Mid-West to attend the conference.  

Horizon Pharmaceuticals is developing a treatment for FA. Before the conference, a group of people with FA attended a focus group to see what challenges we had in taking the drug. This medication has to be injected. The thought of injecting a needle into my own arm is scary to me, but the hope of a cure overshadows my fear.

Jennifer Farmer started the conference by giving everyone an overview of FA.  Every time I hear her speak, I learn more about FA. She also told us about ongoing clinical trials and the need for people with FA to be enrolled in the patient registry. 

6th Annual Striking Courage Bowlathon

On Saturday, April 18 The FA Project held their 6th Annual Striking Courage Bowlathon at Candlewood Lanes in North Reading Massachusetts. It was a great night. There was laughing, there was bowling, there was air guitar and there were inspirational stories. It was a great fundraiser for a great cause. 

Concert for Christina

It was a tremendous privilege to have been present at the Concert for Christina: A Tribute to The Beatles, courtesy of New Cavern Productions at the University of the Arts on April 26th.  I attended with Debbie Foerster, a fellow member of the Friedreich’s Ataxia Program at the Children’s Hospital of Philadelphia, another devoted researcher, friend and asset to the FA community in Philadelphia and at large. As a longtime supporter of the Friedreich’s Ataxia Research Alliance and as a true Beatles admirer, I was thrilled to find both in one place, and could imagine no better, brighter way to pass a Sunday evening.

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