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    • #18942
      Richard
      Participant

      Has anyone done this?

       

      Go into Google search and enter “May is ALS Awareness Month” with a date range of May 1 2021 to May 19 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.

       

      What’s your solution in solving the problem of the “May is ALS Awareness Month”  message not getting out to the non-ALS community of people?

       

      Richard

       

    • #18986
      Jim Conner
      Participant

      I believe we need a celebrity that is outspoken and willing to do the work. Parkinsons has Michael J Fox. I know a couple of folks with Parkinsons and the medical advances that has given them back their freedom is amazing. I believe because Fox went onto shows and is an advocate the disease was given more publicity. I don’t want anyone to get ALS, but that is what I think is missing. Recently I put out a post about Steve McMichael of the Bears that was recently diagnosed with ALS. I reached out to his folks to see if he would get active, I have not heard back. Did you know June 2 is Lou Gehrig Day in MLB? It has not been publicized very much. Very few people seem to know. If McMichael went to either Sox Park or Cubs Field that day, WOW would ALS get a kick. Alas no answer so far. There is an Assistant GM for the Calgary Flames named Chris Snow that has ALS. His wife has a grieving post and they do other local things, but again no real national thing. Lastly, look at how few people are on this site. They started a site where I go to see my doctor and all but 2 people on the site are my family members. There at least a dozen of us coming into this doctor.

      Hope this helps.

    • #18987
      Richard
      Participant

      Hi Jim, very good point, a nationally known celebrity would certainty help.  Great that you took the initiative to reach out to Steve McMichaels.  Your effort is exactly what is needed!  If more people were like you (and James), things may be a lot different than they currently are.

       

      Unlike Parkinsons, people with ALS die quickly and degrade even faster, making it difficult to have an ALS person as a spokesperson for any length of time.  But, that doesn’t mean someone not affected with ALS can’t be the spokesperson.  I don’t know if a sports celebrity is the best way to go.  Lots of people don’t follow sports. TV or film star would be good.  However, at this point, any nationally known figure would be great.

       

      You can see a post of mine attempting to rally others into taking matters into their own hands

      ALS Awareness Month – Take Initiative – Reach Out to Your Local & National News

       

      Thanks for taking steps for a better life for pALS and cALS and keep up the great work!

      Rich

      “Better to light a candle than to curse the darkness”

       

       

    • #18994
      Kathy stitz
      Participant

      Unfortunately even if people who don’t have ALS  become aware of it, a lot of times if a medical condition doesn’t affect them personally where they have it or a family member or friend does, then they don’t care about it.

      • #18995
        Richard
        Participant

        Hi Kathy,

         

        Yes, usually (and maybe many) people who don’t have a medical condition or a family member or friend with it, may not care about it, but not all people.  I receive dozens and dozens of donation requests in the US Mail every year, and I do give charities that don’t affect me, family members or friends.  However, there is one disease that I have NEVER received a donation request from, that’s ALS!

         

        Richard

         

    • #18996
      Kathy stitz
      Participant

      Hi Richard,

      If they had more money, then they would be more likely to find effective treatments or a cure for ALS?

      • #18997
        Richard
        Participant

        Hi Kathy,

         

        Very good question.

         

        Having more money doesn’t mean it would be spent well and that there will be any effective treatments or cures soon.

         

        Not having any money probably guarantees that there won’t be any effective treatments or cures soon.

         

        Richard

         

    • #18998
      Kathy stitz
      Participant

      Ok thanks Richard.

    • #18992
      Jim
      Participant

      Hi, If we can’t find an existing celebrity with ALS, which there aren’t too many huge names celebrities right now, why not make one. What about having a young girl with ALS our spokesperson? Someone like 8-12 year old ‘Kennedy Arney. ALS is hitting younger people more and ALS numbers are increasing. We could email Kennedy Arney, see how she’s doing and contact CNN/CBS/Opera talk shows etc.. Try too get them to interview and run a story on her or a similar young person with ALS. Grab peoples attention! Can’t find a celebrity, make one. Just a thought. Jim

       

      “Donate Now | Hopemobile for Kennedy Arney by Hark-ALS” https://secure.givelively.org/donate/hark-als/hopemobile-for-kennedy-arney

       

      “”ALS Has No Victory Over Me” – A Chat with Kennedy Arney – I’m Dying to Tell You Podcast” https://imdyingtotellyoupodcast.com/episode/als-has-no-victory-over-me-a-chat-with-kennedy-arney/

      • #19002
        Richard
        Participant

        Jim, excellent suggestion!!

         

        Richard

         

    • #19003
      Richard
      Participant

      …and remember

       
      <div class=”bbp-reply-content”>

      Ask Your Senators to Support New and Increased Funding for ALS Research

       

      Senator Chris Coons (D-DE) and Senator Bill Cassidy (R-LA) – released a letter with the goal of enlisting their colleagues in our fight to accelerate the search for effective new treatments and a cure for ALS. By signing the letter, senators agree to support the appropriations priorities that will accelerate our search for effective new treatments and a cure for ALS.

       

      Join the campaign to boost funding for ALS research by asking your senators to add their names to the FY2022 ALS Appropriations Dear Colleague letter.

      </div>
       

      https://als.quorum.us/campaign/senatefy22appropriations/

       
      <div class=”bbp-reply-content”>

      Richard

       

      </div>

    • #19005
      Dagmar Munn
      Keymaster

      I believe that ALS is not reaching news organizations simply because ALS is not “news generating.” The newsgroups focus on world events. We don’t bring “eyeballs to the screen.” Announcements about ALS medical treatments are ho-hum. so is the occasional celebrity who is diagnosed or dies of ALS.

      Look at what it took to get mental health/depression accepted as a news-worthy topic. We don’t need one celebrity spokesperson… we need many, many. The only way the Ice Bucket Challenge made the news was when many celebrities joined in.

      And, it’s the message. What is our message? Better diagnosis? Better treatments for symptoms? More funding? More research? Support for families & caregivers? …..Our messages are all over the board …and confusing to outsiders.

      We need a “think-tank” of experts and pALS to identify goals, create a marketing plan …and follow-through.

      Has this been tried before? Yes. But it’s worth trying again 🙂

      • #19006
        Richard
        Participant

        Hi Dagmar,

         

        I agree with what you’ve said above.

         

        The first step in solving a problem is recognizing that there is a problem. We’ve done that.

         

        The ability to perceive or think differently is important.  Strength lies in differences, not in similarities.

         

        Is there anything that ALSNewsToday can do to help establish a “think-tank” of experts and pALS to identify goals, create a marketing plan …and follow-through?

         

        Richard

         

    • #19008
      Jim
      Participant

      Agree Richard, Can we get Bionews to help spread the news about ALS further? Into National News and other Media sources to non pALS. There is so much which needs to be done! Bionews definitely has the partnerships and resources!

      1. “Advocacy – BioNews” https://bionews.com/advocacy/
    • #19017
      Dagmar Munn
      Keymaster

      Richard and Jim, to answer your questions… ALS News Today is one of 50+ news divisions representing rare diseases managed by our parent company BioNews Services – – which is a privately own business. BioNews is an online health news provider, that is their focus and business. From my experience working for BioNews as a columnist, their “advocacy” is mainly limited to “providing a platform” for rare disease issues. If we in the ALS community create something newsworthy, they will report on it. But, I don’t believe we should count on or expect BioNews or ALS News Today to initiate social action projects – – for ALS.

      Again, I think the responsibility is on the shoulders of the ALS community. Rather than looking at news organizations and complaining, “why don’t they do something?” We should be the ones doing something. Then, there will be news that they can report.

      On the idea of a think-tank… most of the leading ALS organizations began that way, and have gone on to contribute much to help – – lest we forget who else is out there working hard to be newsworthy, here is a good list:

      https://www.youralsguide.com/resource-list.html

      We’re not alone in our efforts. But need to be working together to achieve our goals.

    • #19022
      Richard
      Participant

      Hi Dagmar,

       

      Is it possible for one of the ALSNewsToday regular contributors to write an essay on the importance of getting the word out and the different ways to reach these people/organizations?

       

      A couple of us have been emailing to our local and national news outlets with the hope that they will run a story on TV, social media, web and print.

       

      I’m realistic, I can imagine that if the need to support ALS was widely publicized, that most people would ignore it and a few may contribute.  But, it’s the “domino people” that would be the most helpful.  Domino people are people that further push the cause onto others.

       

      Right now I feel that the ALS message is:

      “If a tree falls in a forest and no one is around to hear it, does it make a sound?”

       

      Rich

       

    • #19024
      Dagmar Munn
      Keymaster

      I’m not sure that pushing ALS News Today to do more is the answer Richard. Here is a link to 20+ columns that have already been published on the topic: https://alsnewstoday.com/?s=ALS+awareness

      Going back to something that was suggested earlier might be successful – – a celebrity spokesperson.

      Back in the days of the Jerry Lewis MDA Telethon, Jerry worked tirelessly to promote awareness and raise funds. CEOs of big corporations lined up to go on TV with Jerry and hand him a check for $10,000++ dollars. I don’t think an ALS spokesperson necessarily needs to be a patient themselves. Jerry Lewis didn’t have muscular dystrophy, but he showcased those who did. We need someone willing to use their public-celebrity platform to make ALS visible. (umpteen years ago Elizabeth Taylor did this for AIDS).

      • #19031
        Richard
        Participant

        Yes Dagmar, plenty of stories about awareness.  Perhaps it’s time for a new game plan. Some very good suggestions were mentioned here.  Hopefully brainstorming will continue (every idea is a link in the chain of progress), then action, followed by positive results!

         

        Rich

         

    • #19020
      Jim Conner
      Participant

      Good discussion. I used McMichael and Fox because of their celebrity status as an example. It is a shame that any spokesman only has a short period of time to be active, like Pat Quinn and the Ice Bucket Challenge. The other Jim has a good idea to recruit a young person to speak out.

      MLB has Lou Gehrig Day coming up in 10 days and you have to dig into MLB.com to find information, doggone few people I know have even heard of Lou Gehrig Day. It has some good stuff, but like many things ALS is behind a number of other issues, not out in front on the website.  I hope MLB brings out local folks that have the disease and show it front and center and the national networks do some advertising.

      I thank Bionews for this site and what they do for us, however it is usually the troops and their support people that get the ground work done. I am on MEWE and I am going to try and set up an ALS site there, if there is one I cant find it. Gotta get the word out any way we can.

      I learned of a U of Michigan hockey player that had ALS on MEWE and passed away 2 years ago. A foundation has been set up, but is little known outside of Ann Arbor. A list of these organizations would help.

      Lets keep throwing thoughts out there.

       

    • #19032
      Jim
      Participant

      Hi, Don’t think we are pushing anyone to get more involved in different ways, we are simply ‘Asking for more help to get the word out in areas which haven’t gotten any or not enough coverage!

      It’s difficult to expect pALS to do this alone as so many of us die within a few years or less after diagnosis. Actually, as we know intial diagnoses takes on average a year. It further complicates things when pALS can’t walk, use their arms or communicatie easily. pALS absolutely need help, need support with spreading the word about ALS awareness. We are asking! Time is Not on our side! Who’s responsible? Everyone! This includes businesses making massive amounts of money from this disease, making money from pALS, Yes this includes pharmaceutical companies, research organizations, non-profit associations and pALS a like are all responsible for getting the ALS story out there!

      Richard and I have already written to so many people including the ALSA, we are keeping an extensive list of who we’ve contacted. We’ve already posted a partial list here on the forum. Let’s not shift the accountability solely onto pALS. Everybody needs to stay active. Actions speak louder than words! Dagmar Thank you for all your support and hard work over the years! There is so much more to be accomplished!

    • #19033
      Kathy stitz
      Participant

      Jim,

      You made so many great points.   Thank you for all that you and Richard are doing.  Have you heard back from anyone you have contacted?

      • #19038
        Richard
        Participant

        Hi Kathy,

         

        Of the news and ALS organizations that I have contacted, I either got a canned response (something like thank you for your submission) or no response.

         

        Only the ALS Therapy Development Institute (TDI) digital marketing manager responded with a personal message.  Key points of the ALS TDI response included:

         

        “For ALS Awareness month this year our goal has been to encourage community members to share their personal stories to spread awareness and highlight the need for research. We have seen over time that these personal stories are usually the ones that major media outlets end up picking up and that people outside of the ALS community are most receptive to.”

         

        “Although we could spend more money to push the Awareness Month messaging out to major outlets and possibly improve coverage, our mission is 100% research focused and our current funds need to be invested in our lab to keep research programs moving forward.”

         

        “…we will continue to brainstorm to improve our coverage in a way that allows us to stick to our mission and continue to spread awareness.”

         

        “… I will try and brainstorm some good baseball connections this week, beyond Lou Gehrig, and see if we can get some stories written up, connecting ALS, research at ALS TDI and baseball, and sent out to these organizations. Hopefully they will pick them up to go along with the day.”

         

        Rich

         

         

         

    • #19042
      Jim
      Participant

      Hi, Certainly trying to spread the word out to non-pals. Lots of automatic responses, wrote from a Governor to the National News and working my way up from Florida toward New York with local tv news stations. Wrote between 40-50 emails, that’s a start! Got a wonderful, thoughtful reply from a reporter in Kentucky, but he thought I was personally available for an interview in Kentucky. Recieved 115,000 views and 300 kind messages on a photo sharing site, had and still have a link to the ALS Association for donations on that website (I know the ALSA has done lots for pALS) and it’s very much appreciated! Anyway, have been trying to get the word out there! Any help is important! I know so many people have tireously worked so hard supporting ALS causeses and spreading the word about awarness, most of these brave souls are gone now! It’s now time to pick up the torch!

    • #19099
      Richard
      Participant

      Here’s a question…

       

      Why is May ALS Awareness Month in the US when the International Alliance of ALS/MND Associations celebrates June 21 as the global day of recognition of ALS/MND?

       

      ALS/MND is a global problem. It does not discriminate on the basis of race, ethnicity, socioeconomic status or region. There are people living with ALS/MND all over the world.

       

      To me, it would make sense to coordinate with the international community.

       

      Richard

       

    • #19100
      Jim
      Participant
    • #19117
      Russell
      Participant

      I do believe MLB can make a big splash here. They have the resources. June 2nd Lou Gehrig day will be celebrated across every stadium in America. The ALS committee worked hard to get MLB to agree and jump on board. ALS will take front stage Wednesday and just maybe get another Jolt…

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