• This topic has 3 replies, 4 voices, and was last updated 2 months ago by Jim.
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    • #20208
      Amanda
      Keymaster

      Do you think advocating for pALS can be helpful? Are you involved in advocacy? How did you get involved? What do you do? How does being an advocate make you feel? What changes do you think are the most beneficial for pALS?

    • #20239
      Marianne Opilla
      Participant

      I am not personally involved because of inability to do much of anything.  I would like to if Icould.

      My daughter has sponsored 2 virtual ALS running races to raise money and awareness, and my SkiClub is sponsoring a Walk-A-THON in October.  I hope maybe I can participate in my fancy motorized wheelchair donated to me through my AWESOME Virginia ALS chapter!!

    • #20242
      Richard
      Participant

      Yes, I think advocating for pALS is helpful. However, what people CAN do is very different from what people WILL do,

       

      Before I mention my advocacy involvement I want to emphases my frustration with the ALS organizations and foundations which I feel are not leading the ALS advocacy charge. Let me give two examples of obvious failures on their parts:

       

      First Example:

      Frustration comes directly from the ALS Association.  I had received an email from them touting their success in their effort to work with the US House of Representatives in passing the ALS Disability Insurance Access Act.  Below is a quote from their email:

       

      Over the last four years, YOU have helped build the momentum and support for this bill. From a single sponsor when it was originally introduced in 2016

       

      I wouldn’t be very proud of the fact that it took 4 years to pass.  Rather, I’d be embarrassed!  Their bar is set way too low if they think 4 years to pass a bill is acceptable and worth bragging about it.  These people are one of the voices for the people with ALS (pALS) and it’s clear to me they have no sense of urgency.  All this makes me feel that pALS are like a nail competing against a hammer.

       

      Second Example:

      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.

       

      Yes, my friend and I are involved in ALS advocacy.

       

      In the first example, I emailed the ALS Association pointing out to them their lack of urgency.

       

      In the second example, 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 “An over-Look 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 –

      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 (and not buried in a forum) on how to and ways to be an ALS advocate, providing links, email addresses and templates.

       

      Richard

       

       

    • #20243
      Jim
      Participant

      Hi,

      Without advocacy nothing would get done, Congress would do nothing, fund nothing, without pALS and their families involvement. Advocacy is essential for progress! Ask yourself, Is there enough funding for ALS research? Are there enough people involved in advocacy and awareness? Do you see any commercials on tv about ALS? Are businesses with ALS interests doing enough? Has your state governor declared May or June an ALS awareness month? Have you contacted any news stations, government representatives or made an effort supporting advocacy?

      Along with baseball’s Lou Gehrig day, as Richard suggested, a professional soccer player/s would be an important part of advocacy. Advocates like Steve Gleason and Brain Wallach/Sandra Abrevaya with IAMALS have already done so much. The ALS Watchdog group is also pushing some boundaries. We desperately need more people getting involved!

      Remember in the 1990’s seeing a movie Philadelphia with Tom Hanks and Denzel Washington. What an eye opener that was for myself and much of the public about HIV awareness. A similar movie about a person with ALS would be another step in the right direction. There has been progress since the Ice Bucket Challenge, but has there been enough progress? It’s been 80 years since Lou Gehrig died and no real effective treatments. It is a horribly complicated disease. Only you can answer these questions and Yes you can make a difference!

      Richard, Thank you for the reminder, I’m going to re-send the ALS awareness email letter to national and local news stations again this week!

      All the Best, Jim

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