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Shandra

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@shandrajamie

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    Shandra replied to the topic Beaches Are Not For Me in the forum Living with FA 1 year, 7 months ago

    The beach is my favorite place to be. Yeah it’s extremely difficult and exhausting to get on and off of it (because i am a person that still walks but cannot independently on sand) and the beaches where I am mostly have stairs and no accessibility. I do a lot of butt scooting and if I’m with someone I hang onto them for dear life lol. But that…[Read more]

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    Shandra replied to the topic any helpful tips for handling being in the dark? in the forum Living with FA 1 year, 7 months ago

    My iPhone flashlight is my very best friend. I have a walker but that really doesn’t make a difference, I NEED to see

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    Shandra replied to the topic Remembering the last time I ran in the forum Living with FA 1 year, 7 months ago

    The last time I ran decently enough to call it running was 10 years ago, and I remember I was filming a “How to Be a Ninja” video for YouTube because that’s what all the cool preteens were doing (lol). The last time I moved my body at a pace quicker than walking but in a manner that looked really worrisome and not really resembling of running was…[Read more]

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    Shandra replied to the topic Hitting shins with a walker in the forum Living with FA 1 year, 7 months ago

    Hahahahaha! I don’t think my legs are long enough bc I’ve never had this problem. I always clip my ankles. Its like when we had razor scooters, but far less enjoyable.

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    Shandra replied to the topic Is FA research speeding up, or is it just me? in the forum FA Research, Scientific News, & Clinical Trials 1 year, 7 months ago

    It’s definitely speeding up. 🙂

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    Shandra replied to the topic Opinions on Etravirine? in the forum FA Research, Scientific News, & Clinical Trials 1 year, 7 months ago

    I 100% don’t think it’s something to put all hope in. There are much more exciting things in development 🙂 but this might end up being a drug that works alongside another drug to alleviate some of FA’s progression (synergistic benefits). That would be exciting while we wait for something that really targets the root of the problem. And since we…[Read more]

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    Shandra replied to the topic In Need of Genetic Testing in the forum FA Research, Scientific News, & Clinical Trials 1 year, 9 months ago

    Matt that’s so cool omg. Like, REALLY cool. 🙂

    Have you tried contacting the study team? I’m positive they could give you proof of your FA. They probably still have some of your blood in a -80 freezer lol.

    Technology has definitely improved though and therefore if you just did a new test now they could actually give you your repeat numbers…[Read more]

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    Shandra started the topic Therapeutic Prospects for Friedreich's Ataxia in the forum FA Research, Scientific News, & Clinical Trials 1 year, 9 months ago

    Therapeutic Prospects for Friedreich’s Ataxia

    I heavily enjoyed reading this. I think it does a phenomenal job of explaining current and future approaches to treating FA. Please read if you have a chance, and feel free to ask any questions (it is not written for the general public to fully understand, so I can help with translating any part of…[Read more]

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    Shandra replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 1 year, 9 months ago

    I doubt they have data on this that is shareable at this point. If animal studies have been initiated then I suspect any suggestive data is too preliminary and it’d therefore be irresponsible for them to share.

    The in vitro studies suggest a dose-dependent increase in Frataxin and the patent gives them the rights to test up to 600 mg daily in…[Read more]

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    Shandra replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 1 year, 9 months ago

    Basically, the research group that discovered Etravirine’s potential has filed for a patent giving them the rights to develop/test this as a treatment in FA patients.

    Since etravirine is already a drug on the market, it is claimed by someone for use in HIV. In FA, no one owns Etravirine, so theoretically any company could start clinical trials…[Read more]

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    Shandra replied to the topic New Platform Will Allow for Collaborative Friedreich’s Ataxia Data Sharing in the forum FA Research, Scientific News, & Clinical Trials 1 year, 9 months ago

    I’m so excited about this. Great things come from collaborations and easier access to data. This is basically a pipeline for FA researchers everywhere. 😀

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    Shandra replied to the topic Most Promising Treatment Option (Opinion) in the forum Living with FA 1 year, 10 months ago

    Based on their presentation at CHOP in October, I’d say UF is the farthest along. And based on press release it seems like Votager isn’t too far behind. I know nothing about the other companies, beyond the fact that they have an FA gene therapy project.

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    Shandra replied to the topic Most Promising Treatment Option (Opinion) in the forum Living with FA 1 year, 10 months ago

    The Moxie trial is not gene therapy. 🙂
    I really like the way FARA breaks down drugs into categories in their treatment pipeline (link if interested, but I’ll explain: http://www.curefa.org/pipeline )

    So the various drugs in development take different approaches to helping us. ANYTHING that could help is exciting, but some things are obviously…[Read more]

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    Shandra replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 1 year, 10 months ago

    Hey Rich that is a great question. Obviously the mechanism of why Etravirine affects Frataxin regulation is unclear. So it makes sense to wonder if it could affect gene therapy. If you took them at the same time, it might. But you wouldn’t be taking them at the same time.

    Etravirine isn’t a one-and-done drug. HIV patients have to con…[Read more]

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    Shandra replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 1 year, 11 months ago

    That’s cool! Can anyone joining the WhatsApp group still post any updates here though? I like the forum for many reasons–including that the information people share is available for anyone to see 🙂

  • Profile picture of Shandra

    Shandra replied to the topic Indoor Rock-Climbing in the forum Living with FA 1 year, 11 months ago

    I’ve been going every Tuesday now since the start of the semester (mid-January). I joined the climbing club at my school. No one in the club has a disability but they were super excited that I wanted to give it a go.

    Before starting I had no idea if I was going to be able to do it. I still walk but my peripheral sensation is almost completely…[Read more]

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    Shandra replied to the topic Coffee? in the forum Living with FA 1 year, 11 months ago

    I can’t tell if I have FAtigue or if I’m just being overworked because of grad school. It’s probably both, lol.

    I’ve never had coffee though… I don’t like the idea of relying on an external source of energy. My thoughts might change over time hahaha, but for now i just try to rest when I need it and stay as active as possible so I don’t have…[Read more]

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    Shandra replied to the topic New Post from "Little Victories" – A Steadfast Anchor in the forum Living with FA 1 year, 11 months ago

    Great article!!! I love both of ya 😀

    Also it’s funny you chose the word steadfast. Was that intentional (referencing the Steadfast/Actimmune trials for FA)?

  • Profile picture of Shandra

    Shandra replied to the topic Sleep Disorder Linked to Different Types of Ataxia in the forum FA Research, Scientific News, & Clinical Trials 1 year, 11 months ago

    Omg, for the longest time I’ve thought “there must be a link here”! Like almost every FA’er I’ve ever talked to, I exhibit sleep behaviors suggestive of REM behavior disorder (walking, talking, moving etc…). I remember when I came across this paper I was even more convinced. I hope someone out there will do a study on FA sleep someday soon so we…[Read more]

  • Profile picture of Shandra

    Shandra replied to the topic RTA 408- MOXIe/ Reata Clinical trial in the forum FA Research, Scientific News, & Clinical Trials 1 year, 11 months ago

    Hi Chris! While the trials are ongoing I can’t speak to my individual experience as that could disrupt the clinical trial process, however I can say that the published results from the Part 1 trial showed 3 months of treatment with the active medication led to neurological improvements (measured by FARS) equal to reversal of 1 year of FA…[Read more]

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