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    • #18470
      Amanda
      Keymaster

      Wow, you are never going to believe what I received in an email.  As most of you know, I have been volunteering for the pre-fALS study for many years.  (pre familial ALS)  I received and email to attend a webinar to discuss a new clinical trial.  I think they are going to test a treatment to prevent the onset of ALS in people with the SOD1 mutation. I know they already started testing to see if they could stop the progression of ALS in SOD1 mutated pALS. I haven’t seen the results of this part yet.  I think the webinar  is an invitation to learn about and possibly volunteer for the study.  After the 20th I’ll share what I have learned.  I’m both excited and nervous to learn about the next phase of the pre-fALS study.

    • #18482
      Debra Kaufman
      Participant

      Keep us in the loop ! It does sound exciting!

    • #18491
      David Crellin
      Participant

      Great news! We need a similar therapy for my son who carries the C9orf72 gene mutation I inherited from my mother, and for all the other types of ALS. Fingers crossed, and toes – oh, I forgot, they’re crossed already by default.

       

    • #18499
      Bill
      Participant

      Pretty cool Amanda. That’s going to one tough study! How years would you have to be in trial to know you prevented ALS. Keep us posted. I too was in prefALS but they couldn’t find our family mutation.

    • #18507
      Amanda
      Keymaster

      I’m not sure how long the trial would have to go to show definitive evidence.  What I have learned is that when you have the SOD1 mutation, before  you start having difficulties, there is a protein which is elevated in the blood. (this is how i understand it). At one point when I spoke to the doctor it seemed like they would run a trial on people when this protein started showing up as elevated.  I suspect that this might be part of what they will discuss next week. I’m excited, scared and very hopeful. Right after the webinar I go for testing in Miami. I hate these trips because part of the tests are a bit painful as you probably know. However, I feel so strongly that it is essential that we/I do whatever I can to help my family and other pALS!!  My fingers and toes are crossed!!!

    • #18556
      Amanda
      Keymaster

      So, we had our zoom meeting yesterday. It was interesting.  I’m not sure how many other pre-fALS were in the meeting because it was set up so that you could not see the the other participants for confidentiality reasons. We were asked not to share information on social media sites at this time so I’m not sure what I can and cannot share 🙂  I have a my appointment next week for the pre-fALS study in Miami.  It is a 2 day visit in which I undergo alot of the testing that they do for ALS, as well as tests looking for biomarkers.  They would like to do a lumbar puncture (spinal tap) but I’m frightened.  They get better data from that fluid than just from blood work.  Not to mention that the treatment would be intrathecal (occurring within or administered into the spinal theca) so I feel that I should be comfortable with the procedure.  Any thoughts or words of encouragement?  I feel like I should do the spinal tabs (2-3 times a year) because it provides better information for the study, but I’m nervous. They do EMGs and other tests involving a lot of needles at each of these visits.

      At my visit next week I will find out exactly what I can share on social media. You all will be the first to know. I will say that I think they are on to something promising for genetically linked ALS.  Unfortunately that is only about 10% of pALS. It all centers around the protein, and is related to a lot of the articles we’ve been reading on ALS News Today.

      pALS, when you go to the ALS clinic do they do the same test (EMGs, MRIs, ect.) each time or just for the diagnostic appointments?  What tests do they do?

    • #18578
      Bill
      Participant

      Good luck Amanda! I think you’ll be in good hands in Miami. I liked all the researchers there. As far as ALS clinic, ours here locally just does SVC or FVC for breathing, blood pressure, oxygen saturation and a number of strength checks. If mri’s, emgs or other types of tests were required we’d be referred. My experience is that is done during diagnosis before we are placed in the clinic routine.

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