• Kiki became a registered member 1 year, 3 months ago

    • Hello Kiki, 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!

      • Hello Amanda,
        Thank you ever so much for your lovely welcome massage. I feel very sorry that you and your family have such a long history of dealing with this cruel disease but you are totally right, the researchers will find more and more answers especially for genetic cases. Its so great that you and your family support research. I am curious about the ongoing discussion and greatful that help exists here. (Sorry for my English I am a nonnative)
        Thank you again Amanda for marking this world better.
        I’ll contact you or Dagmar if I need further assistance. At first I’ll try to get familiar with the forum/current research etc.
        Best wishes

        • You are welcome!! And please, don’t worry about your English. There are people from all over the world on the forum. It helps us learn about other cultures 🙂

    • Hello Kiki,

      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

      • Hello Dagmar,
        Thank you for your warmth welcome and all the kind word. At first I am very sorry that you have to live with this devastating disease though 10 years is a time and I really hope that progression will stop. I think research might be getting closer to a solution or at least I try to have hope. Also I’m curious about the forum threads in order to get a bit more familiar with everything. From what I found so far I have to say that you and Amanda make the world a better place and I’d like to thank you for your great job here on the forum!! Thank you again. Have a lovely day. I’m looking forward to chatting with you too!
        Best wishes,

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