Richard
Forum Replies Created
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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
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…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>
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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
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”
ALS Awareness Month – Take Initiative – Reach Out to Your Local & National News
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An example that the ALS Association is failing….
Go into Google search and enter “May is ALS Awareness Month” with a date range of May 1 2021 to May 20 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.
Richard
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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
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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 -
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
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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
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I know….very impressive…. congratulations to you!!!! And congratulations to ALS News Today for also making the list!
Rich
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Hi.
I would volunteer for clinical trials (so far I’ve been rejected), first for my own benefit and then for the ALS community.
Even, if I received a placebo, that would be fine. The Healey Clinical trials that I’m familiar with allow you to get on the real medicine after a certain amount of time.
I would prefer Phase 3 trials, less invasion is also preferred. However, for me and maybe other ALS patients, the world is flat. So, trying anything is better than the inevitable.
As a side note, the Healey Clinical trials are looking for volunteers.
https://clinicaltrials.gov/ct2/show/NCT04297683?term=Platform
Richard
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Hi Dagmar, Thanks for the background information about the ALS Association.
The ALS Association published it’s strategic plan (2021-2024). Publishing the tactical plan would be helpful.
https://www.als.org/whatever-it-takes
Richard
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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
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Jim, excellent suggestion!!
Richard
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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
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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
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Thanks for the date correction!
I understand about the hype of articles coming from university PR departments. I usually skip ALS articles from financial websites because I feel the financial institutions just want people to invest into that particular company or business.
That would be interesting to see if a combination of drugs that slowed progression would be better than one at a time. Hoping that someone is looking into that.
Thanks,
Rich
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Very interesting for what you are saying! Sorry to see this drug has been under consideration since 2008. Disappointing that things move so slowly and the drug does not show much promise. I guess you answered my question, it’s “hype”.
Richard
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The ALS Association needs to focus on the points between A and Z, the journey from B to Y and not going from A to Z.
Richard
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The ALS Association has gone into sleep mode. If leaders at the ALS Association don’t change. Then change the leaders.
Richard
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Hi James, all are great suggestions….and thanks for being part of the solution!!
Rich
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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
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Hi All, below are a couple of additional websites for ways to contact your US government officials:
Congress
https://www.house.gov/representatives/find-your-representative
Senate
https://www.senate.gov/senators/senators-contact.htm?OrderBy=state&Sort=ASC
Rich
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Hi Kathy, I’ve communicated to lawmakers by being notified from articles by alsnewstoday.
Amanda posted this information back in January 2021
https://alsnewstoday.com/forums/forums/topic/right-to-try-act-2/
Other possible ways:
https://helpmayuri.com/mobilize
Rich
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Hi Kathy, your comment stresses the point of my original comment and the main purpose of this thread…
“If the general public, lawmakers, researchers, FDA were more focused on the quality of life (or lack of quality) a person with ALS has instead of the number of years they live, then perhaps there would be a greater sense of urgency in curing ALS.”
Yes, I agree with a lot of others who have commented; you need to stay positive, you need to find new meaning in your life, re-define yourself, be thankful for what you had and have, etc. However, not actively communicating to lawmakers, researchers, FDA, ALS support groups, foundations, etc. about the ALS diminished quality of life along with the snail’s pace of research and lack of substantial treatments only hurts yourself and future ALS patients. For a problem shared is a problem halved.
Rich