• Kathleen B became a registered member 3 months, 1 week ago

    • Hello Kathleen,

      Welcome to the forum! I am one of the forum moderators and a person 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.

      Please note that this forum’s purpose is to discuss issues related to ALS, not to provide diagnosis or medical advice.

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

      • Thank you Dagmar,
        I really enjoy your writing style and input of practical things! Even made a print copy of one item ( the ‘new’ new normal)…as it helped me figure out a way to share ALS diagnosis with a handful of close friends. I look forward to sharing and learning. Such as: I read there is a way to ‘private message’…how is that done? Something tells me the post to you & Amanda are both seen by all members? (so there’s my 1st question 🙂

        • On your profile page you’ll find the option to send a “message” (public) or send a “private message” – – choose that one if you don’t want it seen by all members. Dagmar

    • Hello Kathleen, 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

      • Thank you Amanda,
        I’d like to go by the name ‘Katie’ for the forum–how do I do that without messing up my ‘user name’ (which said must be real name). I have been reading the ALS Digest & forums a month now…just took some tech help to figure out how to register, (LOL! have not done any social networks, just teaching technology things with IT & fellow teacher support!)
        I’m really new to this ALS thing…even tho’ I recognize well who I am ‘not’ any longer. Have no idea yet if there is any genetic component; have only had 1st clinic appointment in early May (state of MI resident and going to U of M Center of Excellence Pranger ALS Clinic).

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