Richard
Forum Replies Created
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In response to: “Do you need a break from the ALS awareness topic?”
Never!
Be not afraid of going slowly, be afraid only of standing still. Doing the best and all you can at this moment puts you in the best place for the next moment.
In response to: “What ideas do you have about continuing to stay involved and what do you need to make that happen?”
One post in this forum suggests a good idea:
ALS – Take Action Website
Under the ALS Awareness Month forum also has a good idea:
ALS Awareness Month – Take Initiative – Reach Out to Your Local & National News
Richard
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I was wondering the same thing. Hoping ALSNewsToday will publish the results when they become available.
Richard
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Is June 2nd the best day to highlight ALS awareness?
I would pick a summer day (kids out of school) and on a weekend. I would believe you’d get a bigger TV audience and possibly more ALS awareness.
Richard
Note:
June 2 is the day in 1925 that Gehrig began his record-breaking consecutive games streak.
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Is June 2nd the best day to highlight ALS awareness?
I would pick a summer day (kids out of school) and a weekend day. I would believe you’d get a bigger TV audience.
Richard
Note:
June 2 is the day in 1925 that Gehrig began his record-breaking consecutive games streak.
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Here’s idea…
Since baseball has about 500 million fans world wide and soccer has over 3 billion fans world wide, how about selecting a soccer star with ALS and have a day for him?
Why just baseball? Or just soccer? All sports should have an ALS day!
Richard
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Until there is a cure or at the very least effective ALS treatments, every day should be the global day of recognition of ALS!
Having a positive attitude about your ALS diagnosis and seeing a need and fighting for more treatments are not mutually exclusive.
Get involved in making the non-pALS and cALS community aware of ALS!
You don’t need to see the whole stair case. Just take the first step.
Richard
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Google “I’m the luckiest man in the world speech” and Lou Gehrig’s farewell speech links are returned.
Died young, was at the top of his game when ALS symptoms first appeared. That’s lucky? To me, that’s pretty unlucky!
Unfortunately, ALS is linked to the luckiest man. Is that the best message we like to see about ALS awareness?
Richard
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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?
Richard
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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
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Perhaps “A Lack of Support” might be a better acronym for ALS.
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Hi John, hope you were able to access the iamals website so that you could enter your viewpoint.
Richard
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Hi Jim,
I’m little surprised that ALSNewsToday didn’t mention anything about June 21st being Global ALS day.
This omission makes me think that some of these ALS organizations work in a vacuum, not collaborating, sharing ideas and information. You need to learn from the mistakes of others, because you won’t live long enough to make them all yourself. Additionally, none of us is as smart as all of us. ALS treatments won’t happen by chance; rather it will happen by change.
Richard
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Hi Jean, your effort is impressive! I’ve said this before in previous forum discussions that the definition of insanity is doing the same thing over and over again and expecting different results. Your Alzheimer statistics are very disappointing. Hopefully your perspective will lead to efforts with more promising outcomes. Keep up the great work and continue to find those black swans!
Rich
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Hi Jean, thanks for your input. It’s great to hear different perspectives. They say that If everyone thought the same way, then only one person would be needed to solve a problem. So hearing different ideas are valuable. Since an idea without execution is just a dream, I’m presuming you are taking active steps in promoting your idea so that a cure can be found.
Richard
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I agree with you 100%! Money could be better spent. Giving an award to the COVID-19 vaccination procrastinators sends the wrong message is just rewarding bad behavior.
By the way, my solution to the COVID-19 vaccination procrastinators is simple; if you’re not vaccinated and you’re hospitalized due to COVID-19, insurance shouldn’t cover the expense and instead make the patient pay out-of-pocket.
Richard
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Hi Russell,
May I modify your second to last sentence to the following “Hope the awareness hits a grand slam home run.”
Richard
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Hi Amanda,
I have not sent other sports organizations the suggestion about having an ALS Awareness Day. I just thought of it yesterday.
Some research would first need to be done, some of which would include:
Each sport’s:
- Point person/organization to email
- email addresses
- Sports figure(s) to highlight
The proposal coming from me may not have a very big impact. However, the proposal coming from ALSNewsToday or the ALS Association would carry a lot more weight. Who initiated MLB Lou Gehrig Day?
I did email the ALS Association with the suggestion today. I have not heard back from them.
The only way to fail is not to try and an idea without execution is just a dream. So let’s try, stop dreaming and make this happen. Any suggestions?
Richard
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Here’s idea… Since baseball has about 500 million fans world wide and soccer has over 3 billion fans world wide, how about selecting a soccer star with ALS and have a day for him?
Why just baseball? Or just soccer? All sports should have an ALS day.
Richard
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Hi Jim,
I’m somewhat disappointed in having Jerry Tolve sing the national anthem at Yankee Stadium. I watched the TV News link and Jerry himself admitted that to look and to listen to him you’d think he is doing well. It’s sending the wrong message in my book. You need to show the devastation of the disease and Jerry Tolve does not do that; he sends the opposite message. People are going to walk away thinking the disease is livable. Instead, I would have had a famous singing star (maybe even more than one singer), that has a huge online following, singing the song being surrounded by ALS patients in wheelchairs and breathing masks. People need to see images that stick in their minds. Hopefully other baseball stadiums will do something more disturbing with the hope of getting a reaction out of the audience.
Richard
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The ALS Association long term goal of 2030 reminds of the quote “distant water does not put out a nearby fire.”
Richard
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ALS is defined as “A Lack of Solutions”.
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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
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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
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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