• Steve Gillan became a registered member 2 years, 2 months ago

    • Hello Steve,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even suggestions, just let me or Amanda (who shares co-moderator duties with me) know, and we will do our best to help you.

      Again, thank you for joining our forum – – We look forward to your comments and I look forward to chatting with you! Dagmar

    • Hello Steve, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost my father, grandfather, both aunts, and a several cousins to ALS. My family has been volunteering for medical research for over a decade, and I believe we are getting closer to finding away to stop the progression of ALS.
      Other members are pALS, caregivers and medical professionals. Please review the ongoing discussions and join in at anytime. You are also welcomed to post discussion topics, ask questions and respond to other members. The more we share, the better we all are in this community.
      Please feel free to contact myself or Dagmar if you need any kind of assistance. Again, welcome to the forum!
      Amanda

    • Hi Steve,
      I read your story and I agree with you 100 pr cent. I do not know why they will not give these druges if you want them. Doesn’t that fall under The Right to Try Act?
      I have a granddaughter, now living in Prague, and she just was home for a visit and we are going to have her check if these drugs are available in other countries. We understood they are.

      • There is also a drug called Clenbuterol that is in trial in a few weeks. But this has also been around for a long time for treatment of other diseases and was tried for ALS and seemed to have some good effects yet it is not tried. If people are dying, like my daughter, then we want her to try whatever looks like it has hope, but it is impossible to do that. I ask myself why every day as I watch her get weaker and weaker. I write letters to the President, I know that won’t work but makes me feel like I amdoing something, I wrote to 8 drug companies, a total of 16 letters to co and coos and never got one reply, no money there so why bother. I email the FDA and nothing. So it seems to me a lot of nothing!! I hate to be negative but not like we have a lot of time for no one to care.

        • Hi Jane, so sorry for your daughter and you. Have you thought about “Right to Try”. It was signed in Jan. My post was also moved to the “Research forum” A gentlemen name Mike had a good suggestion and he is giving his wife two FDA approved drugs off label. Sodium Phenylbutyrate and Tudca. I am thinking to move in that direction for my wife. Good luck

    • Hi Steve,
      Thanks for your response but I cannot find Mike to read his post on the drugs he has found off label.Where did you find him?

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