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    • #18935
      Richard
      Participant

      The ALS Association today (Tuesday May 18 2021) announced a goal of making ALS a livable disease by 2030.

       

      Nation’s Largest ALS Nonprofit Plans to End Fatal Nature of Neurodegenerative Disease Within Decade.

       

      https://www.prnewswire.com/news-releases/als-association-announces-goal-of-making-als-livable-by-2030-301294291.html

      An ounce of performance is worth pounds of promises and in my opinion, using a long term goal as an excuse for the bad behavior of today.

       

      Richard

       

    • #18948

      Thanks Richard for your this info!
      I like the “More focused research”

      • #19095
        Aloha Frank
        Participant

        Good Lord, setting a goal like that is merely a weak attempt to fool people into believing that making ALS ‘livable’ nine years from now is attainable when we all know it’s nothing but pie in the sky nonsense. Nothing has been done in the last 100 years to come up with anything close to reaching that imaginary goal, so what makes them think that will all change by 2030? How’s the ‘treatment’ you’re getting these days working for you? They can set all the lofty goals they want, but ALS patients like us need and deserve ‘effective treatment’ now. Realistically, there is nothing on the horizon for us. The last thing we need are more false promises. God bless everyone who suffers every day with this horrible disease.

        • #19096
          Richard
          Participant

          ALS is defined as “A Lack of Solutions”.

           

    • #18964
      Bill
      Participant

      Sorry , although no one would argue the sentiment, I much prefer shorter doable goals with plans. A ten year goal to make ALS livable is more a wish. Things that support that wish are more important. Hopefully those are well thought out.

      • #18969
        Richard
        Participant

        The ALS Association needs to focus on the points between A and Z, the journey from B to Y and not going from A to Z.

         

        Richard

         

    • #18965
      Lynn
      Participant

      I found the ALS Association’s of making ALS a livable disease by 2030 is appalling. They have had years to support finding treatments, and they have failed. I find it very frustrating that they spend more on salaries than the do on research and supporting pALS and cALS.

      • #18968
        Richard
        Participant

        The ALS Association has gone into sleep mode.  If leaders at the ALS Association don’t change. Then change the leaders.

         

        Richard

         

         

    • #18971
      Richard
      Participant

      An example that the ALS Association is failing….

       

      Go into Google search and enter “May is ALS Awareness Month” with a date range of May 1 2021 to May 20 2021.

       

      Disappointing results!

       

      No major news outlets were listed in the first 5 search result pages.  Just a lot of local outlets.

       

      Those responsible for getting the word out are clearly failing.  A new approach is necessary.

      “The definition of insanity is doing the same thing over and over again and expecting a different result.”

       

      I’ve received lots of emails from ALS and neurological organizations about May being ALS Awareness month.  The wrong people are being targeted.  People with ALS already know about ALS.  It’s the non-ALS community that needs the message being sent to them and that is where the major news outlets can help.

       

      Richard

       

      • #18974
        Anonymous
        Inactive

        SO true. There are a lot of folks asking for money. I get one just about daily.

    • #18975
      Jim
      Participant

      I’m switching any donations on emails etc.. away from the ALS association until we see more tangible results from them!

    • #19018
      Dagmar Munn
      Keymaster

      I for one was happy to see the new goal set by the ALS Association. However, the previous comments made here lead me to believe that many misunderstand the role of the ALS Association (ALSA).

      They are not responsible for research outcomes. Rather, they raise funds for research and grant monies to research projects. And, they do more with their funds than allocate it to research. Every year, ALSA shares their financial statement and are transparent in where the money goes. https://www.als.org/about-us/financial-information This recent 2020 report shows only 6.7% went to administrative costs (including salaries). 44.1% went to fund research and 25% went to Patient & Community Services (ie., equipment loan closets, home visits, support groups, patient/caregiver outings, etc.).

      A brief history – – when I was diagnosed in 2010, we in the ALS community still relied on the annual Jerry Lewis MDA Telethon for funding research & services. ALS was just one of the many muscular dystrophies represented by the MDA. We didn’t get much attention at all. The ALSA emerged from the MDA and broke off to be its own entity… gaining visibility by 2014 during the Ice Bucket Challenge.

      At that time, I remember ALSA announcing its goal as: improving the quality of life for the ALS patient. And they supported ALS Clinics, created equipment loan closets, bolstered support groups, funded programs to expand technology & equipment for the patient. ….Look at all that we patients have now.

      So, when I read that ALSA is turning its attention to making ALS livable by 2030, I think they can do it.

      • #19021
        Richard
        Participant

        Hi Dagmar,  Thanks for the background information about the ALS Association.

         

        The ALS Association published it’s strategic plan (2021-2024).  Publishing the tactical plan would be helpful.

        https://www.als.org/whatever-it-takes

         

        Richard

         

    • #19019
      Kathy stitz
      Participant

      I agree with the disappointment that has been expressed by the forum members.   Also those of us who are living with ALS now don’t have the time to be waiting that long.   We need effective treatments and a cure now.

    • #19034
      Amanda
      Keymaster

      Dagmar, I agree! The ALS Association is so much more than just about research.  When my father and Aunts had ALS, they worked with my family to ensure that we had the things and support we needed. They also had a hand in connecting us with Hospice. They provided support in so many ways.

      I know all of us on here want a cure yesterday! ALS is horrible and it is difficult for pALS.  Each organization has a role and I support the ALS Association and I know they are trying to make things better and help support research.

      • #19036
        Richard
        Participant

        Hi.

         

        I do give credit to the ALS Association (als.org) for hosting a meeting (Tuesday May 25 2021 10am ET) with representatives from the FDA to hear from the ALS community on its urgent need for expedited access to experimental therapies.

         

        Unfortunately, during the meeting the ALS Association said that a similar meeting was held in 2013 and all the pALS participants are now all dead.

         

        Hoping that the ALS Association doesn’t take another 8 years before seeing the need for corrective action on the part of the FDA.  The ALS Association shouldn’t take today’s FDA meeting as  “fire-and-forget” moment and instead constantly monitor the FDA and its actions to ensure expediting access to experimental therapies.

         

        Not sure when the taped video will be available.  Below is the website of this meeting with the ALS Association and the FDA.

        https://www.als.org/advocacy/we-cant-wait

         

        Rich

         

    • #19097
      Jim
      Participant

      Lou Gehrig passed away in 1941. His wife Eleanor passed away in 1984. Do you think they would be impressed that 80 years later, No known causes, No effective treatments and No cure! After 80 years!

      • #19105
        Richard
        Participant

        The ALS Association long term goal of 2030 reminds of the quote “distant water does not put out a nearby fire.”

         

        Richard

         

    • #19450
      Duane
      Participant

      The Association does a lot of good, but like the rest of us they don’t have a solution to the problem. With research being what it is, I think their goal is unrealistic. My guess would be to double that, and you might get a cocktail that slows it. Aloha Frank said it well.

    • #19451
      Kathy stitz
      Participant

      I agree that Aloha Frank said it well !

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