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    • #18760
      Richard
      Participant

      Hi All,

       

      I’m getting lots of emails from various ALS and neurological organizations about May being ALS Awareness month.

       

      I feel that the effort in the “ALS Awareness” initiative is only making the people that have ALS (or friends, caregivers, family members) aware of ALS.

       

      These organizations need to reach the non-ALS community!

       

      Go to CNN or Foxnews websites and search on “ALS”.  You won’t find any mention of ALS awareness.  This basically means these organizations are failing in making (non-ALS) people aware of the disease.

       

      There are still 3 weeks remaining in the month of May, let’s hope ALS awareness reaches more than the people that already know about ALS.

       

      Richard

    • #18764
      Kathy stitz
      Participant

      I agree with you, Richard.   pALS are very aware of ALS because we suffer with it every day but the general public isn’t aware of it so that is very frustrating.   I feel like the only way the general public learns about ALS is if they read stories about famous people who have ALS ( like Steve McMichael and O.J. Brigance).

       

    • #18765
      Dagmar Munn
      Keymaster

      I see a couple of issues compounding this problem:

      1. Too many awareness messages circulate within the ALS community. We’re “preaching to the choir” – – the challenge is to break through into the mainstream public.

      2. There are way too many ALS organizations asking for donations – – and that confuses the public. It gives the impression that donations get diluted and initiatives miss out on funding. (i.e, say “cancer” and people will think of the American Cancer Society; not related organizations).

      3. The media? Here are all the other conditions vying for media recognition in May:
      May is….
      Cystic Fibrosis Awareness Month
      Ehlers Danlos Awareness Month
      Huntingdon’s Disease Awareness Month
      Lupus Awareness Month
      Prader Willi Syndrome Awareness Month
      Vasculitis Awareness Month
      ALS Awareness Month
      Arthritis Awareness Month
      Asian American and Pacific Islander Heritage Month
      Better Speech and Hearing Month
      Brain Cancer Awareness Month
      Celiac Disease Awareness Month
      Correct Posture Month
      Food Allergy Action Month
      Date Your Mate Month
      Healthy Vision Month
      Hepatitis Awareness Month
      International Victorious Woman Month
      Melanoma / Skin Cancer Detection & Prevention Month
      Mental Health Awareness Month
      National Asthma and Allergy Awareness Month
      National Lyme Disease Awareness Month
      National Mediterranean Diet Month
      National Teen Self-Esteem Month

      • #18782
        Richard
        Participant

        Dagmar, from what you reported, ALS is vying for media recognition with a lot of other conditions.  Perhaps May isn’t the best month.  Referencing the Healthline website, perhaps ALS should switch months to July, December or January if ALS wants more focused attention.

        https://www.healthline.com/health/directory-awareness-months

        Richard

    • #18766
      Anonymous
      Inactive

      Hi Richard,

      I agree, ALS month started with a tiny footprint. Nothing in the news, nothing on many websites. I was looking forward to the trumpet blowing and the banners flying, but instead got to hear crickets.

    • #18772
      Richard
      Participant

      Two quotes come to mind…

      “An idea without execution is just a dream”

      “You are either part of the problem or part of the solution”

      So, I had a thought…others please weigh in on this;

      What if ALS News Today helps make the non-ALS community aware of ALS (Awareness Month) by providing a template write-up that each of its members can then send to their local TV news stations and local newspapers, with the hope that ALS awareness information is either broadcasted or printed.

      The template write-up should be/must be brief, explain ALS, identify the hurdles ALS patients, family members and caregivers must face, references to how people can help. What else should be included?

      To further show the lack of ALS awareness, just look up on Wikipedia “ALS Awareness Month” and you can quickly see how just a few states have declared May as ALS Awareness Month. By now, all 50 states and US Territories should be listed.

      https://en.wikipedia.org/wiki/ALS_Awareness_Month

       

      Richard

       

    • #18781
      Jim
      Participant

      Richard your Correct, not enough people are aware of ALS! Really Surprised only a few States/Governors have declared May an ALS awareness month! Although, I’ve been living abroad for many years, would still submit the ALS Information to local news and radio stations in Florida where I grew up and would look into submitting this info to the Governors office. The States which haven’t officially declared May an ALS month, should! Has enough been done, apparently not! Best to move with this relatively quick, keeping it in May. I’m on board with you Richard with this important initiative and with Everyone here on the forum!

      • #18790
        Dagmar Munn
        Keymaster

        I agree James. We shouldn’t focus on changing the month. Instead, we need another “viral event” like the 2014 Ice Bucket Challenge that will get attention worldwide. Alas, the public is very fickle and wants entertainment & fun in exchange for their donation.

    • #18784
      Kathy stitz
      Participant

      For each condition, how is it determined what month will be the Awareness Month?

      • #18789
        Dagmar Munn
        Keymaster

        Kathy that is a good question. I believe that awareness months/awareness days come to be by several routes:

        – Presidential proclamation (nation-wide)
        – Governor proclamation (state by state)
        – Or a group simply holds their activities on the same day, or month year after year – until it becomes a tradition.

    • #18791
      Kathy stitz
      Participant

      Thanks so much Dagmar!

    • #18793
      Jim
      Participant

      Hi, Wanted to mention, Since it’s ALS awareness month. Thought people here on the forum including myself could also post on various social media sites the Interactive ALS flyer, sites like FB, Twitter, Instagram, Tiktok etc. For instance I recently posted a photo not related to ALS a few months ago on ‘imgur and it got 157,000 views within a couple days. These social media sites do get wide coverage. May want to consider not only stating ‘May as ALS month on the flyer, but also giving a link to donate money. A user friendly link easy to use, taking any amount of money donations, non-profit research type organization. Do you know an organization which would be worthwhile? The flyer could also have member faces on it, ‘The many faces of ALS! I hope members will give their ideas, then we can brainstorm what’s the best direction. As far as a viral event, that’s a good idea, although could be tough with Covid taking lots of attention, but maybe linking Covid and ALS in a flyer could work, to get peoples attention! ‘You know Covid, Do you know the many faces of ALS! Just some above thoughts, Let’s get some more input from members here!

      • #18795
        Richard
        Participant

        Hi James, all are great suggestions….and thanks for being part of the solution!!

        Rich

    • #18796
      Richard
      Participant

      The organizations responsible for leading the charge for an ALS cure need to change-up their game plan. They need a “disruptive” initiative. The telephone did not come into existence from the persistent improvement of the postcard.

      Quoting Albert Einstein…“The definition of insanity is doing the same thing over and over again, but expecting different results.”

      Rich

    • #18797
      Richard
      Participant

      Trying to be part of the solution….  I sent the below email to [email protected]

       

      Also sent a similar email to my local ALS chapter and specifically mentioned my local news websites that didn’t have any stories on May being ALS Awareness month.

       

      Perhaps if forum members wrote a similar email, then more attention may been seen, resulting in more funding and eventually a cure.

       

      ====/

      Hi,

      The month of May is ALS Awareness month.

      Both CNN and Foxnews websites don’t have any stories about May being ALS Awareness month.

      The ALS organization needs to make a greater effort in getting the word out.

      I’ve received lots of emails from ALS and neurological organizations about May being ALS Awareness month. However, 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.

      With the hope of being published on their websites and/or a TV news story…Would it be possible for you to contact CNN, Foxnews and other news organizations to let them know that May is ALS Awareness month along with identifying ways on how people can help and/or donate to help find a cure?

      Thanks,
      Richard

       

      • This reply was modified 6 months, 3 weeks ago by Richard.
    • #18802
      Richard
      Participant

      Hi All,

       

      Trying to be part of the solution….  I sent the below email to [email protected]

       

      Perhaps if forum members wrote a similar email, then more attention may be given, resulting in more funding and eventually an ALS cure.

       

      Also sent a similar email to my local ALS chapter and specifically mentioned my local news websites that didn’t have any stories on May being ALS Awareness month.

       

      ===== email sent to ALS organization =====

       

      Hi,

       

      The month of May is ALS Awareness month.

       

      Both CNN and Foxnews websites don’t have any stories about May being ALS Awareness month.

       

      The ALS organization needs to make a greater effort in getting the word out.

       

      I’ve received lots of emails from ALS and neurological organizations about May being ALS Awareness month.  However, 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.

       

      With the hope of being published on their websites and/or a TV news story…would it be possible for you to contact CNN, Foxnews and other news organizations to let them know that May is ALS Awareness month along with identifying ways on how people can help and/or donate to help find a cure?

       

      Thanks,

      Richard

       

    • #18804
      Jim
      Participant

      Hi Everyone, I’m with you on this Richard and will start emailing very soon after writing a template email and also knowing where people (non-pALS and pALS) should/can donate? I’d rather people including myself Not donate to any big pharmaceutical companies or companies affiliated with them. Many pharmaceutical companies are already selling potentially life saving drugs at drastically inflated prices! What about people donating to ‘The ALS Association’ (link below)? Looks to be the exact same Association which should contacting the Big news stations about ALS awareness month. Donations can be made directly to local city ALS branches through the website? With my emails, could also add a ‘The ALS Association’ link. What do others here think about it? Let’s spread the word to non pALS. All the Best, Jim

       

      “The ALS Association: Dedicated to Finding a Cure for ALS | The ALS Association” https://www.als.org

    • #18894
      Jim
      Participant

      Hi Everyone,

      Anytime is a Great time to get involved, but especially during ALS awareness month! And there’s of course still plenty of time to get involved this month! Spread the word about May ALS awareness month on social media, contact your local news or state representatives and even send e-mails to national media outlets. Anything you feel comfortable with! Do it your way! Don’t watch others do the work. This disease has been extremely Difficult on pALS and our families, let’s not be easy on it! A journey of a thousand miles, starts with that first step.Take that first step and make a difference! All the Best!

      I’m mentioning the below association in many e-mails, but you can mention any ALS charitable association you like! https://ALS.org

    • #19090
      Richard
      Participant

      Hoping that the Major League Baseball (MLB) June 2nd 2021 Lou Gehrig Day has a positive outcome that brings more attention to ALS.  The MLB organization should have started this 80 years ago.  But, there is a quote that can be applied to this situation: The best time to plant a tree was 20 years ago. The second best time is today.”

       

      Here’s a thought…why doesn’t ALSNewsToday (or any other ALS organization) reach out to professional Football, Basketball, Hockey and Soccer organizations and do the same as MLB (an ALS awareness day) but with a star from that particular sport?

       

      Lou Gehrig Day

       

      Richard

       

    • #19118
      Russell
      Participant

      I really believe its coming. I think this will kick start everything. Sports has always made this country tick and hopefully the other sports  venues will follow. This could be the start of something big but MLB has to do this right.This has to grab the attention of the people right off the bat.

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