Ataxia and me website

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 I found this website helpful.


ataxia and me.org



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Sadness

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  You might think, from these postings, that I have the greatest ataxia attitude ever.  But I have my days.  Today I can’t stop crying. This is an incredibly difficult thing to deal with.  Everyone with ataxia (unless they’re in complete denial) has days like this.  Today all my advice about meditation and exercise is out the window.  It’s a grieving day. Some of you may have gotten annoyed with my happy talk.  Please read my posts on Rage, Suicide, Depression.  Happy talk?  As Sheryl Crow said, “No one said this would be easy.” I have no advice for days like this.  They happen.  I just need to ride this out.  I bought black-out shades for my room so I’m going to my dark hole.
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I hope you all are doing well. I was just checking up on ataxia trial news. If you ever want to check out what is going on yourself, google  clinicaltrials.gov  and just type in SCA6 or whatever disease you are interested in into the search box. Doing this reminded me that the PRIME-Ataxia exercise study is recruiting. This study allows remote participation (flyer attached). I also listened to a video about how the first FDA approval of a medicine to help with  Freidrich's ataxia  came about. In the video, the company scientist described the importance of having a robust disease life history database and patient advocacy. https://www.ataxia.org/fda-approves-first-treatment-for-friedreichs-ataxia/ The FDA recently the FDA announced approval for  SKYCLARYS  (omaveloxolone) for the treatment of Friedreich’s Ataxia. This is the first and only FDA-approved prescription medicine for Friedreich’s Ataxia (FA). NAF is thrilled about this announcement and proud to have been involved in the p
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