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Carolyn Barry

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@carker

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  • Profile picture of Amanda

    Amanda started the topic QALSody in the forum ALS In The Media 5 days, 11 hours ago

    The local News did a story on SOD1 ALS and QALSody!

  • Profile picture of Amanda

    Amanda replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 5 days, 20 hours ago

    Maryann, I’m sorry. I miss read the “who” part.

  • Profile picture of Amanda

    Amanda started the topic The next Step in the forum Living With ALS 6 days ago

    Thursday afternoon I received a text from the U of Miami team asking if I could be there on Friday. I responded, “Absolutely” and went home and packed an overnight bag. A little of the back story .. I have been participating in the Pre-fALS study since 2010ish. On December 2nd, they confirmed I had SOD1 ALS. At that time they expected QALSody…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 6 days ago

    @L Hagman,
    That’s great news! Please let us know how you are doing and what you think of the trial.
    Amanda

  • Profile picture of Amanda

    Amanda started the topic ALS TRIVIA – – "ALS Association" – – Did you know? in the forum ALS Awareness Month 6 days, 6 hours ago

    Did you know that the ALS association is just 38 years old? It was created through a merger of the ALS Society of America and the National ALS Foundation and supports every state in the United States. Other countries also have chapters.

     

    What other organizations do you recommend to help pALS and their families?

  • Profile picture of Amanda

    Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 1 week, 5 days ago

    Mel,
    I think there should be a standard and protocol for diagnosis. I think if you have insurance, the insurance company would require specific requirements. I hope you have success and feel and improvements.
    Amanda

  • Profile picture of Amanda

    Amanda started the topic ALS TRIVIA – – "ALS Has Many Names" Did you Know? in the forum ALS Awareness Month 1 week, 6 days ago

    “The disease was identified in 1869 by French neurologist Jean-Martin Charcot and became more widely known internationally on June 2, 1941, when it ended the career of one of baseball’s most beloved players, Lou Gehrig. For many years, ALS was commonly known as Lou Gehrig’s disease.”

    What other names does ALS go by?

  • Profile picture of Amanda

    Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 2 weeks, 1 day ago

    @Mel,
    My doctor did blood work a couple of times, as well as testing spinal fluid, genetics, urine, EMG, Nerve conduction tests, Fine and gross motor skills assessments, cognitive assessments, and a ton of lifestyle and diet forms (that took a couple of hours.) There were more too! TESTs, TESTs, TESTs!! I did not have any thing like lyme…[Read more]

  • Profile picture of Amanda

    Amanda started the topic My 2 Minutes of Fame – What Inspires You? in the forum Living With ALS 2 weeks, 2 days ago

    This week I was interviewed by WINK News in SWFL for ALS Awareness Month. They are focusing on the treatment, QALSody which was recently approved by the FDA. The medical reporter’s sister-in-law has sporadic ALS and she was so excited to hear about my case and that I will get the t…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 2 weeks, 3 days ago

    Here are a few peer reviewed medical/science articles and other articles about researching the root causes of…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 2 weeks, 3 days ago

    Good morning Lisa,
    No, I don’t, not at all. The conversations goes where it goes, and other members read the discussions, chime in and add information. It isn’t uncommon at all. But thank you for all your help and support. Your contributions are appreciated! We try very diligently to ensure that our forum policies are adhered to and that…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 2 weeks, 4 days ago

    Yes Lisa,
    My last response was following the conversation, not directed at your original post.

  • Profile picture of Amanda

    Amanda wrote a new post 2 weeks, 5 days ago

    SOD1 mutation: Did you know?Did you know that 5% to 10% of ALS is associated with a genetic mutation. Did you know that the SOD1 mutation was the first mutation identified

  • Profile picture of Amanda

    Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 3 weeks ago

    Hi Mel,
    How is the SOT performed and how does it alter your DNA? My understanding is that in order to alter DNA the treatment must pass through the blood brain barrier and that can only be done using an intrathecal procedure and going through cerebral-spinal fluid. Is that part of the process? What are they using? I’m eager to learn more…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 3 weeks ago

    I’m continuing to research BodyScience and it does not appear that they accept insurance. That is a huge red flag for me, especially since they have medical doctors working there. Has anyone been able to use their health insurance at BodyScience? Also, I looked at the “Home Continuation” kits for pALS that had their treatments! Wozer, the prices!…[Read more]

  • Profile picture of Amanda

    Amanda started the topic ALS TRIVIA – – "Stephen Hawking" Did you know? in the forum ALS Awareness Month 3 weeks, 2 days ago

    Stephen Hawking was the longest-living pALS (8 January 1942 – 14 March 2018). In 1963, at age 21, Hawking was diagnosed with an early-onset slow-progressing form of motor neuron disease that gradually, over decades, paralyzed him. He continued to make significant contributions to our world. He contributed numerous discoveries in the field o…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 3 weeks, 2 days ago

    Dustin,

    I’ve heard of Ketamine for Depression and related disorders, but not ALS. When I googled, there is a clinic in Florida that specifically states Ketamine treatment for people with ALS. BodyScience is also in Florida. Now I’m wondering if Florida laws are more lenient? I do know that Ketamine can help with depression and pain, so it…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 3 weeks, 2 days ago

    Brian, thank you for sharing. I hope that you understand mine and Dagmar’s role on the forum. We are both very dedicated and protective of our community. There are so many scams targeting pALS and other people with rare diseases, and most promise a magical cure that no one else knows about. Without research, and valid data and information, we…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 3 weeks, 3 days ago

    Brian,
    Do you work for BodyScience? You said, “we’re working on this.” I can see if you are having positive results you are probably invested and have the desire to help others which we appreciate!

    @ all forum members, As for a “cure,” I caution our forum members to do their research prior to getting treatment of any kind that is not from…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 3 weeks, 3 days ago

    Dagmar,
    I asked the same question on a different thread and Brian pm’d me a phone number. I asked that he post the information (not the phone) number so that our members could see the source and research on their own. That was not done. I’m leary of this company. I have been doing research and if I learn anything that is documented by…[Read more]

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