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    • #21481
      Amanda
      Keymaster

      When it comes to events such as Rare Disease Day and ALS Awareness Month are you invested? Are those events that you desire to get involved in? Why or why not? Do you believe that they are beneficial and if so, in what ways?

    • #21495
      Richard
      Participant

      Go into Google search and enter “May is ALS Awareness Month” with a date range of May 1 2021 to May 31 2021.

       

      Very disappointing results!

       

      No major news outlets were listed in the first 5 search result pages.  Just a lot of local outlets. Absent are CNN, NBC, ABC, CBS, OANN, Fox, Newsmax and all the major newspaper’s websites.

       

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

       

      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.

       

      My friend and I had been emailing news organizations, philanthropists, foundations, political people and ALS organizations about ALS awareness.  Below is an example of what an email can contain:

      ======= email start ======

      Hi.

      The month of May is ALS (Amyotrophic Lateral Sclerosis) Awareness Month.

      Even though the month of May is over, any time is a good time to make others aware of ALS.

      Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease that destroys the body’s ability to control muscle movement. There is no effective treatment for this deadly disease, no known cause, and currently no cure.

      It would be tremendous if your website/newspaper made mention of ALS to your readers to stimulate more awareness, with any of the following information:

      1. There are no known causes, no effective treatments or cure.
      2. Motor Neuron Diseases such as ALS are increasing in the USA.
      3. Only four states have declared May an ALS awareness month.
      4. Raise awareness about the difficulties faced by ALS patients and their families.
      5. Ask your Senators to support new and increased funding for ALS research.
      6. Advance policies that improve the quality of life for ALS patients.
      7. Expand the network of support for those suffering from ALS.
      8. Advocate for investments in research that will enhance our understanding of the causes of ALS, identify effective treatments, and eventually discover a cure.
      9. ALS research is underfunded.

      One of the biggest problems with the ALS awareness is that the non-ALS community does not get sufficiently informed. Emails do get sent out by different ALS and neurological organizations mentioning the challenges and lack of treatment options for ALS. However, the people receiving the emails already know about the suffering that comes with ALS. Due to the rarity of ALS and its deficient awareness, ALS patients and their caregivers sometimes refer to “ALS” as “A Lousy Sickness” or “A Lack of Support”.

      It’s more important, it’s imperative to get the word out about the devastation of ALS to people unaware of ALS.

      My hope is you will reach out to your audience and inform them of this terrible disease! You can truly save lives and ease the suffering of people by running a news story about ALS.

      You can contact the following ALS organizations for more information about ALS:

      The ALS Therapy Development Institute (ALS TDI)

      The ALS Association

      I Am ALS

      Steve Gleason Foundation

      The Les Turner ALS Foundation

      North East ALS Consortium

      MDA

      ALSNewsToday

      Thank you so much for your consideration and all my gratitude!

      ======= email end ======

       

      Being an advocate for ALS can be frustrating when you feel that the leading ALS organizations show a lack of urgency.

       

      What is the ALSNewsToday doing to promote advocacy?

       

      For starters, ALSNewsToday can have a link on their home page on how to and ways to be an ALS advocate.

       

    • #21519
      Amanda
      Keymaster

      That’s what you posted last year Richard. Hopefully this year we will see more about ALS awareness month. We can surely get involved with your suggestions.

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