Viewing 14 reply threads
  • Author
    Posts
    • #16248
      Debra Kaufman
      Participant
    • #16255
      Dagmar Munn
      Keymaster
    • #16258
      Giselle Vargas
      Participant

      Hi Dagmar,
      Is  it possible to post a link to the ALSA petition to expedite access to AMX0035?

      Such exciting news!!

      Giselle

       

    • #16260
      Dee Hagen
      Participant

      I signed the petition today and forwarded it on to close family and friends, asking them to do the same. It’s nice to see a bit of light for this dark diagnosis.

    • #16259
      Katherine Hooks
      Participant

      Hi, everyone I can’t wait too long. My last ALS visit in July the Dr.said I may only have a year left. Tomorrow I am going in for a feeding tube. I still can eat but my breathing has dropped. I am still mobile but my speech is bad. So if I can take AMX0035 to prolong my life that would be great. Bless y’all.

    • #16262
      Dagmar Munn
      Keymaster

      Giselle – – here is the ALS Assoc article plus link to the petition:

      ALSA information: http://web.alsa.org/site/PageNavigator/blog_090320.html

      Petition: https://als.quorum.us/campaign/28538/?utm_source=blog-chapter

    • #16270
      Dagmar Munn
      Keymaster

      Results of the CENTAUR study: a trial of AMX0035 for people with ALS

      SEPTEMBER 04, 2020 / 3:00 PM – 4:00 PM (EST)

      Dr. Sabrina Paganoni and Dr. Merit Cudkowicz will review the results of the CENTAUR trial evaluating AMX0035 in people with ALS.

      Register for webinar: https://www.neals.org/for-people-with-als-caregivers/educational-webinars/results-of-the-centaur-study-a-trial-of-amx0035-for-people-with-als

    • #16291
      Jane Kriskey
      Participant

      Thank you for that it was very enlightening and to think 2 young men in their 20’s with a small company could do this but big companies have not been able to over many, many years. That tells me it is not a money maker to them, which seems to be what drugs are all about.

      Are there trials going on now for AMX35?

      Again, thanks and I hope this will come out soon to everyone.

    • #16302
      Dagmar Munn
      Keymaster
    • #16397
      Dagmar Munn
      Keymaster

      Last week I cheered “YAY!” ?That was quickly followed by a “BOO!” ?and then, all I could say was, “Oh well.” ?

      Read about why, in my column for ALS News Today: Things to Do While Waiting for a Cure.

      Our ALS “clocks” are still ticking all while we – – wait for a petition to be circulated and submitted – – wait for the FDA to decide to shorten the approval process – – wait one year during this “shortened” process – – then wait for AMX0035 to be available.

      What do you think of the situation? Do you think other Rare Diseases have the same challenges getting a new treatment approved?

    • #16407
      Duane
      Participant

      It’s a small step in the right direction!

    • #16414
      Jonathan L Maddock
      Participant

      I had a blogger friend, who writes about my home town, put out an article to try and get more signatures for AMX0035 early approval:

      Jon Maddock: All In Against ALS

    • #16422
      Dagmar Munn
      Keymaster

      Jonathan – – that is a great article about you! I enjoyed learning a bit more about you and love the photo of you on the catamaran!

      Kudos to your friend for writing it… and helping to spread the word about the ALSA petition for early approval of AMX0035.

    • #16433
      Marianne Opilla
      Participant

      Johnathan,

      Great article! Thanks for sharing.  I sent the petition via my social media and Emails and my family did also.  Many people are signing the petition, but Im not confident it is enough to influence the FDA and manufacturer.  We shall hope, and see what happens.

    • #16498
      David Crellin
      Participant

      Think the FDA is slow & bureaucratic? You’ve got it easy! Try EMA and UK regs.
      I was ‘a very naughty boy’ and ordered TUDCA from Amazon. TUDCA and Sodium Phenylbutyrate combine in AMX0035. My consultant would not prescribe anything other than Riluzole, so stuff him! Several old friends (3 at last count) are medical consultants here in UK and know I have C9ALS, one of them supplied me with Metformin. Two of my sons’ friends are directors/ VPs of neuro-pharmas. Then my own rural doctor prescribed Metformin based on evidence I sent him, & he’s arranging kidney function blood test. So I’m running my own little clinical trial, checking muscle strength, aerobic capacity, blood glucose levels, etc. Helps that my youngest son is an endurance athlete and has all the measurement tools.
      We have a phrase in the UK: medicine is a postcode lottery (zipcode for US). Seems it’s that and which country you live in with ALS.

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