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    • #12944
      Amanda
      Keymaster

      My cousin (male) was diagnosed with ALS last year.  He seems to be progressing slowly, but he has shared that he often has difficulty getting out of chairs, standing up, and other routine activities. When he goes grocery shopping he is exhausted for the next two days. He’s a trooper and he is trying to stay positive. I think that is a challenge since he is single and has always been very independent. He is understandable concerned about what his life will look like as his ALS progresses.

      In October he is participating in a clinical trial. The trial involves gene therapy, or trying to address the SOD1 genetic mutation that leads to ALS. We are hoping and praying he does not get the placebo.

      Is anyone else involved in this study or anything similar? If so, please share some information.

      As I learn more about the trial I’ll share. It’s exciting to know there is some progress.

    • #12948
      Dagmar Munn
      Keymaster

      Amanda – – my comments don’t really address your question about if anyone is participating in the same clinical trial as your cousin. But… I can’t help but offer some advice regarding his low energy.

      I call it Living in the Slow Lane, and we pALS do have to adjust to a new normal in our body’s energy level. One thing he can do is look for how he is unnecessarily expending energy. Examples: walking and pushing the grocery cart rather than using the electric shopping cart. Lifting or carrying heavy items rather than using a walker to transport them (in the home!). Even changing from a hand-held to an electric toothbrush eases tension in the hands, saving them for other use.

      As far as having trouble getting up from chairs – – he should try to keep his leg muscles strong and moving. Perhaps share with him my column Be Willing to Do Just One.

      His participation in the clinical trial is to be applauded. Your cousin is helping our ALS community become closer to discovery of a cure.

    • #13012
      Lisa Bonahoom
      Participant

      I started a trial today for the gene C9orf72. It runs for 40 weeks and is given by Lumbar Puncture.  I am the first human to receive 20 ml of the drug or placebo.  I have a 50/50 chance.  I will share how it goes! So far, the only side effect is bruising at the site.  I had no headache.

      • #13041
        Amanda
        Keymaster

        @Lisa, where is your trial being conducted out of? The study I volunteer for is doing trials on the SOD1 and C9 with gene therapy through lumbar puncture too. I wonder if it is the same study or of the two are working together. I know Dr. Benatar is working other researchers and sharing information.

    • #13014
      Diana Belland
      Participant

      I’m glad you’re able to participate in this study, Lisa, and look forward to your updates.

    • #13035
      Lisa Bonahoom
      Participant

      I had the first dose last Thursday with no side effects beyond slight headache and soreness at the site.  This trial is funded by Biogen and I am the only patient in this area.  There is a total of 12 people worldwide in this cohort.  I am being treated at Stanford, in California.  6 people, including me, are in the U.S.   It is too soon to feel effects, as I have slow progression, but I will keep you informed!   This drug targets only the C9orf72 mutation, at the genetic level.  That makes me a GMO!

      • #13042
        Amanda
        Keymaster

        That sounds positive! Please continue to keep us posted.

    • #13055
      Dagmar Munn
      Keymaster

      Yes, Lisa… I agree with all the previous comments! Do keep us posted as to progress and your experiences in the study.

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