• Shawn became a registered member 1 year, 7 months ago

    • Hello Shawn,

      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

      • Hi Dagmar & Amanda. Nice to meet you. Thanks for the welcome note. Looks like lots of good information and connections here. I’m a few months post Dx and still trying to get a grip on my situation and make sense of all the information out there. I was extremely fortunate to be seen by Dr. Cudkowicz at MGH so am off to a strong start on my treatment plans. Much more work to do in terms of work plans / communications and long term care.

        • Shawn,
          I’ve heard that doctors name before and he has a good reputation. I’m glad that you were able to get with someone who is knowledgeable about ALS. Please keep us posted and let us know if you have any ideas for the forum. Ideas are always welcomed!!

          • Hi Amanda. Just an FYI Dr. Merit Cudkowicz (a she) is the head of Neurology at Mass General Hospital and Director of the Healy ALS Center there. She is phenomenal I’m lucky to be under her care!

    • Hello Shawn, 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!

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