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FA has its first FDA approved treatment, and it came on Rare Disease Day, Feb. 28. The drug is called Skyclarys, and its main purpose is to help slow the progression of FA symptoms. And it just so happens that this drug is one that I’ve already been taking since I started the open label
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Towards the back portion of 2020, I applied for a service dog through Canine Companions for Independence. Over two years later, I have Schooner. Looking back, it was so worth the wait, but waiting was hard. My mom has never loved having pets. Pet hair is basically inevitable, and she just doesn’t enjoy it. So
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I don’t wake up in the morning and pray for a cure. I don’t close my eyes at night hoping the researchers have a breakthrough tomorrow. I am probably worried about setting my alarm so I get up on time or what interview I’m going to do tomorrow. Living with a progressive disease that is
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Figure 1: Me after I drew my dad’s initials, BG, on the mural at RideATAXIA in Philadelphia. Over two years after I started experiencing symptoms that I couldn’t explain, I heard the words Freidreichs ataxia for the first time. I heard them, but they were empty words. In one ear and out the other they went,
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I vividly remember focusing so hard, trying not to fall off the stage in my high school graduation. I remember running across the courtyard during an intense game of dodgeball at P.E. in elementary school. I remember going out in the backyard and jumping on the trampoline like it was yesterday. Those things aren’t at
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I’m still the same sports-loving, funny, considerate, passionate boy I was when I was a kid. The years have thrown a lot at me, and a disability changes others’ perception of me – perhaps even my self-perception, but who I am is still much the same as I always have been. While I know that
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Time never stands still. Tick, tick, tick… The alarm is just waiting to go off. Add a progressive disease, like Friedreichs ataxia, into the picture and everything feels rushed. Everyday, I find myself rushing to get ready in time to go. It doesn’t matter if I wake up 3 hours before it’s time to go,
Knowin' Noah 