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    • #14109
      Amanda
      Keymaster

      I’m back from my visit to the ALS clinic in Miami. As many of  you know I volunteer for the pre-fALs study. This means I have a significant family history of ALS, and I have a mutated gene that has been linked to ALS. I have the SOD1 mutation.

      This was my 8th or 9th visit, and 10 years in the study. Each year is rather challenging because I have symptoms, but so far, nothing that can be resulting in a diagnoses.

      This year I left feeling very hopeful. It seems they are making progress. They are sending me an article that was published regarding preliminary findings related to biomarkers. It sound very promising for those with the predisposition for ALS due to a SOD1 mutation. I’ll share more after I read the article.

      I’m excited and hopeful. They are now in clinical trials with pALS with SOD1 and C9 mutations. Some with slow progressing ALS, and others with fast progressing ALS. If these trials are successful, then the gene therapy would stop the progress of ALS. The next phase would likely be to administer the treatment to people prior to the onset of ALS.

      That’s just a brief synopsis of what I learned. Once I read the article, I’ll share more information. I’m curious to see if it is something ALS News Today has covered.

      Has anyone heard of any related to research they would like to share? I’d love to hear about other efforts!

      Amanda

    • #14129
      Bill
      Participant

      I also am in preFals at Uof Miami. I have family history of three different FTD related MND’s.  MSA, FTD with MND and my ALS. So far they have not discovered the genetic mutation involved with our family. The common mutations are not there in my dna. My full DNA results are due back at any time. I am anxious to find the results.

       

       

    • #14137
      Angelique Prins
      Participant

      Hi Amanda, I think you talk about this great results from a study in America on SOD1 and hopefully after the good results also for the other genes like FUS. https://als.be/nl/Injectie-door-virus-afgeleverde-gen-inactiverende-vector-blokkeert-ALS-degeneratie.

       

    • #14153
      Amanda
      Keymaster

      Bill,

      Your case and family history are interesting, and I am so sorry your family is enduring all of this.

      Have you seen Dr. Benatar at the clinic or are you seeing the other doctor?

    • #14191
      Amanda
      Keymaster

      Bill are you seeing Dr. Benatar?

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