Calling all Alzheimer's Activists!

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MagicBean
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Re: Calling all Alzheimer's Activists!

Postby MagicBean » Sat Aug 10, 2019 12:12 pm

Oooh, I can make 4pm EST! I'll be there and am looking forward to it! :)

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Re: Calling all Alzheimer's Activists!

Postby TheBrain » Mon Aug 12, 2019 2:07 pm

Unfortunately, I can't make this new time. I look forward to listening to a recording or reading notes about the meeting. I'm sure the meeting will be productive!
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Re: Calling all Alzheimer's Activists!

Postby Julie G » Mon Aug 12, 2019 4:05 pm

Unfortunately, I can't make this new time. I look forward to listening to a recording or reading notes about the meeting. I'm sure the meeting will be productive!

We will miss you and hope you can make the next one.

I'll be logged on 15 minutes beforehand to assist with anyone who has connectivity issues. Email me at juliegee@apoe4.info if you need help. I look forward to seeing everyone tomorrow, August 13th @ 1PM PT, 2PM MT, 3PM CT and 4PM ET!

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Topic: Brain Health Campaign
Time: Aug 13, 2019 01:00 PM Pacific Time (US and Canada)

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Julie G
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Re: Calling all Alzheimer's Activists!

Postby Julie G » Tue Aug 13, 2019 3:42 pm

Huge thanks to JML, floramaria, Shenmen 100, Tincup, TheresaB, Sonoma Mike, and buck3Maureen for attending the kick-off meeting. Your powerful personal stories underscore the importance of this campaign. For those who wanted to attend, but couldn't due to the time, I hope you'll be able to join for the next one. Those who are interested can see a recording of the meeting here. I'll follow up tomorrow with future tasks and direction for us and the larger group.

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Re: Calling all Alzheimer's Activists!

Postby MagicBean » Tue Aug 13, 2019 4:00 pm

So sorry I missed it! I had intended to attend but was in the middle of getting diagnosed with shingles. :( I hope to attend the next one!

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Re: Calling all Alzheimer's Activists!

Postby Julie G » Wed Aug 14, 2019 8:50 am

So sorry I missed it! I had intended to attend but was in the middle of getting diagnosed with shingles. :( I hope to attend the next one!

That's awful, Magic Bean. I'm sending good energy for a speedy recovery. Please join in at any time. Below are some random notes and ideas from our meeting:

Because of our high genetic risk, we are the face of this disease. We are speaking for the almost 6 million Americans who are already affected, and the 14 million who are slated to develop the disease by 2050, if we do nothing to intervene. The pathology that leads to Alzheimer’s disease takes decades to develop. There is currently no cure for this disease, although some prevention strategies appear to mitigate disease progression. The sooner any of us begins working on Alzheimer’s prevention, the better our chances of avoiding the disease. Alzheimer’s prevention, started early, is the best and only chance we have to address this public health epidemic.

1. The group felt strongly that we need a bold name for our campaign that included the words “Alzheimer’s Prevention” either in the name itself or in our tag line. We still need to hammer out the exact name. Please keep brainstorming with us. We also need to develop a logo. Any and all help is appreciated.

2. We want to create a website (separate from ApoE4.Info) to serve as a central collection point for our campaign. Social media posts, PSAs, brochures, etc. would all refer back to this resource. The website would host our mission statement, our consensus statement, and could even feature videotaped clips from various members sharing their stories and the impact that adopting AD prevention strategies is having upon their lives. Any web designers or film makers want to pitch in?

3. See a proposed mission statement. Feel free to recommend edits:

“Alzheimer’s Prevention” (name TBD) is dedicated to understanding and disseminating the science of Alzheimer’s prevention. We do this by:

    -providing basic information about Alzheimer’s prevention
    -running a website and Facebook page
    -acting as a contact point for anyone interested in Alzheimer’s prevention
    -disseminating Alzheimer’s prevention information through social media campaigns, PSAs, brochures, etc.
    -working with the media to inform and educate health professionals and the public about Alzheimer’s prevention

4. Develop a consensus statement, outlining specific non-controversial strategies that have been shown to prevent Alzheimer’s, supported by scientific evidence. Examples would include: exercise, healthy diet, sleep optimization, stress management, avoid air pollution, brain stimulation, social engagement, etc. Anyone want to tackle this?

5. Reach out to other agencies to partner with us, endorse us, or even just refer to our site to build legitimacy.

6. Zero in on our target audience and develop specific plans to address each group with the understanding that full implementation will be done in stages.

What else am I missing?

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Re: Calling all Alzheimer's Activists!

Postby MagicBean » Wed Aug 14, 2019 9:18 am

Hi Julie - really great ideas and the plan looks very exciting! My one thought here is about the use of the word "prevention." It may be worth looking into whether that will that attract attention of the FDA (probably not, since the new website doesn't sound like it will be peddling supplements). The other concern is whether any language used such as prevention may constitute medical advice? Not trying to be a nay-sayer, but just to raise potential concerns before we travel too far down any one road with titles and whatnot.

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Re: Calling all Alzheimer's Activists!

Postby DaleBru » Wed Aug 14, 2019 12:17 pm

Here is my two cents for a possible name: Alzheimer’sHope (all one word, because the juxtaposition is intended to be a bit jarring for those who believe that there is no hope). In my opinion, part of the stigma about AD is that people don't want to know that they might develop a horrible disease for which there is no hope. Who wants to learn their risk when only utter despair can result?

Here is a brief statement I wrote a week or two ago. Maybe it will show more clearly what I mean.

Alzheimer’sHope

Alzheimer's Disease (AD) is often said to be chronic, incurable, irreversible, and even unpreventable. After a moment of serious contemplation of that idea, one realizes that it requires great arrogance and ignorance even to make such a statement. Great scientific progress is being made in understanding the physiological mechanisms that cause AD, despite the failure (so far) of drug companies to invent a magic pill that cures it. Increasingly, old theories from epidemiological (associational) studies are being supported or refuted by rigorous scientific research and analysis. More and more experts are realizing that, while a magic pill may be unlikely, more complex solutions (for example diet, exercise and sleep to name a few) offer great hope for the prevention, and maybe even reversal, of AD.

There is a clear parallel with diabetes mellitus (DM). Many out-of-date practitioners currently tell their patients that DM is chronic, incurable, irreversible, and even unpreventable. But more than 10,000 other doctors around the world are having great success curing real people from diabetes and thus from the many diseases that can result from it (e.g. heart disease, amputations, kidney failure, cancer, mental illnesses, and even perhaps AD and other kinds of dementia).

Don't give up hope. We can take actions today to improve our health and to, hopefully, prevent or even reverse AD; and we can continue to “follow the science” to learn what works in the future. Probably we can help ourselves, and almost certainly we can help our descendants.

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Re: Calling all Alzheimer's Activists!

Postby TheresaB » Wed Aug 14, 2019 2:07 pm

DaleBru wrote:Here is my two cents for a possible name: Alzheimer’sHope (all one word, because the juxtaposition is intended to be a bit jarring for those who believe that there is no hope). In my opinion, part of the stigma about AD is that people don't want to know that they might develop a horrible disease for which there is no hope. Who wants to learn their risk when only utter despair can result?


Alzheimer’sHope does have a nice ring to it. I hate to say anything negative about your wonderfully crafted, beautiful response, but we reviewed some other very clever names yesterday, and we decided we needed something that clearly communicates what we’re about over something clever or abstruse. What we’re about is preventing Alzheimer’s, thus the name (subject to change).

Someone else who was also in on the phone conference please set me straight if I misconstrued this!

My concern with Alzheimer’s Hope is that it implies if you have Alzheimer’s, there’s hope. That’s not our aim, that’s not our audience. It's a "muddy" message.

Which leads to MagicBean’s concerns

MagicBean wrote:My one thought here is about the use of the word "prevention." It may be worth looking into whether that will that attract attention of the FDA (probably not, since the new website doesn't sound like it will be peddling supplements). The other concern is whether any language used such as prevention may constitute medical advice? Not trying to be a nay-sayer, but just to raise potential concerns before we travel too far down any one road with titles and whatnot.


My petulant response is that the medical profession won’t give this advice, so how could our message possibly be construed as medical advice? :P

Okay, putting on my mature face now, I think you bring up some good points that need to be discussed. But there are other groups, bloggers, podcasters, etc. that are promoting health and current research findings (not medical) advice - https://www.mercola.com/, https://www.foundmyfitness.com/, https://www.mindbodygreen.com/, https://thefatemperor.com/, https://robbwolf.com/, https://bengreenfieldfitness.com/, https://www.nutritioncoalition.us/, on and on.
-Theresa
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Re: Calling all Alzheimer's Activists!

Postby floramaria » Wed Aug 14, 2019 3:08 pm

Julie G wrote:
Because of our high genetic risk, we are the face of this disease. We are speaking for the almost 6 million Americans who are already affected, and the 14 million who are slated to develop the disease by 2050, if we do nothing to intervene. The pathology that leads to Alzheimer’s disease takes decades to develop. There is currently no cure for this disease, although some prevention strategies appear to mitigate disease progression. The sooner any of us begins working on Alzheimer’s prevention, the better our chances of avoiding the disease. Alzheimer’s prevention, started early, is the best and only chance we have to address this public health epidemic.

1. The group felt strongly that we need a bold name for our campaign that included the words “Alzheimer’s Prevention” either in the name itself or in our tag line. We still need to hammer out the exact name. Please keep brainstorming with us. We also need to develop a logo. Any and all help is appreciated.

“Alzheimer’s Prevention” (name TBD)


As someone who missed the gathering, I don’t know what ideas have already been tossed out and discarded, so i will offer a twist on the name: “Alzheimer’s Prevention Project”. or perhaps another word with Alzheimer’s Prevention that conveys the same idea

My other suggestion is that “currently” be added to this final line in the first paragraph: Alzheimer’s prevention, started early, is the best and only chance we currently have to address this public health epidemic.
(I am not suggesting it be italicized, only did that to make it easy to spot here. )
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