• We Help One Another

    Posted by Amanda on May 17, 2021 at 10:51 am

    As most of you know, being a moderator is a part-time job for me. I’m supposed to pop on for a few minutes each day, welcome members and post topics when needed.  The more I converse with each of you and get to know each of you, virtually of course, the more I am committed to anything that will help our community.  I learn so much from you!  Not just about research topics, but about focusing on what is important and accepting what I/We cannot control. I feel like I get way more out of our community than I can possibly give. Here is a shout out to all of you!! Thank you for helping to raise ALS Awareness! Thank you for participating in the forum discussions! Thank you for teaching our community! Thank you for volunteering and participating in trials and research! And thank you for joining our forums. Everyone of our members is important!

    Is anyone doing anything for ALS Awareness Month today?  If you have posted on Social Media what did you post?


    Marianne Opilla replied 3 years, 1 month ago 4 Members · 5 Replies
  • 5 Replies
  • Isabelle Z

    May 18, 2021 at 2:58 pm

    Thank you for you, i am very impressed each day when i read our messages and news to be in contact, so close with people with the Same condition than i, with als , and to know that it is possible thanks to you

    • Amanda

      May 19, 2021 at 9:55 am

      @ Isabelle, we do have an amazing community.  Please continue to be a part of it!! If you have questions I’m sure someone has a response.

  • Jim

    May 19, 2021 at 3:40 am

    Hi Amanda, Thank you for bringing up the topic about advocacy and ALS awarness! Richard and I have been working closely sending dozens of emails to media outlets, philanthropic organizations and posting on social media. Richard has already sent a list of emails and an email template here on the forum anyone can use! Even a few people getting involved is important, even sending a few emails is important too! I recently, posted (about als awarness) on a photo sharing website and got 115,000 views, good start! And Richard, my Gosh.. He is tirelessly contacting everyone! He just finished a philanthropic form for donations for ALS with The Ford foundation. So, there are so many positive things everyone can do to heighten awarness about ALS. Wishing everyone all the Best and stay Strong!

    • Amanda

      May 19, 2021 at 9:56 am

      James and Richard,

      THANK YOU!! You two are on a roll, and our community needs you!  Please let me know if I can help in anyway.

  • Marianne Opilla

    May 20, 2021 at 9:52 am

    THANK YOU James, Richard, Amanda and Dagmar for having the energy and motivation to promote awareness and raise funds.  After my 4 hour clinic visit yesterday measuring all of my losses and declines in the last 3 months, I do not have the mental or physical energy for anything ALS.  I am going on a month long RV trip Sunday (my 66 Bday) to meditate, soak in healing hot springs, and look at this beautiful country and love my family.

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