• Tom Pritchard became a registered member 8 months, 2 weeks ago

    • Hello Tom, 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!

      I’m sorry that you had a difficult time posting in the forum. If you continue to struggle please let us know so that we can follow up with our tech team.

    • Thank you Amanda. I am not sure what happened to my contribution. So I created a document and did copy and paste it and that worked. I am curious about potential cures, as would any member of this group who is a victim. Northwestern University in Chicago has developed a possible cure NU9 and Wave Life Sciences in Cambridge, MA has also developed another possible cure WVE-004 dealting with C9orf72, NeuroNata-R has devekioed a stem cell approach NCT01363401 and NCT04745294, I have not yet had a genetic analysis I am wondering about CRISPR and stem cell potentials. I look forward to surviving this affliction, although I am not sure I will.

    • Hello Tom,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is 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. You can also search for past topics or discussions by typing a keyword in the forum’s search bar. 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

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen


We're not around right now. But you can send us an email and we'll get back to you, asap.


Log in with your credentials


Forgot your details?

Create Account