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  • Study making progress

    Posted by Amanda on August 26, 2019 at 7:57 pm

    I believe that researchers are making progress and getting closer to a way to stop¬† the progression and possibly the onset of ALS. Although it feels like the progress is slow and I’ve continued to lose family members to ALS, I am hopeful and grateful that these dedicated researchers will continue with their efforts. The study I volunteer for (I think they refer to it as Pre-fALS) is doing gene therapy on fALS participants targeting the SOD1 and C9 genetic mutations. As part of the study, I participate in quarterly interviews, remote lab work as well as my visits to the University. Today I spoke with my “case manager” and after we finished with all the questions she had for me, I had the opportunity to ask her about their research. She informed me that although they are conducting clinical trials for fALS now, and they anticipate providing a similar trial for pre-fALS participants. They are discussing using two or three possible treatments and one placebo. This would increase the participants chances of getting one of the drugs to a possible 75%. I don’t know all the details, but I can say this with confidence, this research team has made gains in the field over the past 8 years that I have been volunteering. They are trying to schedule my next visit for testing this winter.

    Dagmar replied 4 years, 10 months ago 2 Members · 1 Reply
  • 1 Reply
  • Dagmar

    August 28, 2019 at 12:14 pm

    This sounds like they are truly making progress. Thank you Amanda, for participating in this study – – you are helping all of us!

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