Calling all Alzheimer's Activists!

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circular
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Re: Calling all Alzheimer's Activists!

Post by circular »

I see the value in including Alzheimer's in the name, but I also wonder how effective it will be in the looooong term. I'm thinking of a recent paper about research showing there are other pathologies mimicking Alzheimer's disease. These were newly discovered pathologies. I guess the name could be changes if formal 'Alzheimer's' shrinks to a percentage of what it is now as new diagnostic categories emerge. Tricky over the long haul?
ApoE 3/4 > Thanks in advance for any responses made to my posts.
circular
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Re: Calling all Alzheimer's Activists!

Post by circular »

ru442 wrote:Maybe an image something like this, it kinda stoic but just as a start:

Letting-the-neurons-work.jpeg
I like the image, but I think it and ones just like it are being used a lot as freely available images on the internet. I don't think it's distinctive enough. Getting to be a bit like a visual cliché.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Re: Calling all Alzheimer's Activists!

Post by mike »

I doubt they have locked up rights to that name. If we wanted to go forward with that name, we would need to come up with a domain that is related and memorable...
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Re: Calling all Alzheimer's Activists!

Post by TheBrain »

By focusing on prevention, are we not addressing the reversal of cognitive decline? And what about the possibility of delaying Alzheimer’s versus preventing it? If someone is young and healthy, prevention sounds absolutely doable. But what about those of us who are older and already have damage to our brains due to lifestyle habits, toxicity, etc.? Hopefully, we can prevent Alzheimer’s, but maybe some of us can, at best, delay its onset.

Is the target audience young people only? Maybe I missed this detail, but I don’t have the time right now to again read through all the posts in this thread.
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
Grace
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Re: Calling all Alzheimer's Activists!

Post by Grace »

I love INSTEAD, but worry about being locked in to the number Nine. What if new strategies emerge in the future?
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Re: Calling all Alzheimer's Activists!

Post by Grace »

Also, as far as whether to specify Alzheimer's, I do strongly feel we need to stick with this. It's what we as a group are at genetic risk for and it's what we through the work of Dr Bredesen have data to support the argument we are making. If we open it up to any and all dementias and brain health generally, it will get very tricky to make clear, scientifically supported claims about which strategies have been proven effective. If at a future point there are studies showing these measures transfer to dementia generally, then we can consider changing the name. But first and foremost for this effort is to be credible and that means backing up any recommendation with solid science. Clinical trials tend to be run on very narrow bases, ie, to see if X treatment is effective in X condition...
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Re: Calling all Alzheimer's Activists!

Post by Grace »

What about:

Act Now to Avoid Alzheimer's?

ANAA.ORG...??? (not that zippy but this name has a "call to action" in it)
circular
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Re: Calling all Alzheimer's Activists!

Post by circular »

Grace wrote:What about:

Act Now to Avoid Alzheimer's?

ANAA.ORG...??? (not that zippy but this name has a "call to action" in it)
I like this, but it's possible the first thought of many who assume there is nothing in lifestyle that influences risk will think it's a call to political action and not look under the hood? The right tagline might offset that possibility.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Re: Calling all Alzheimer's Activists!

Post by Grace »

Taglines (just brainstorming):

Prevention and Reversal Are Now Possible with Lifestyle Changes.

Prevention and Reversal Are Now Possible.

Change Your Lifestyle, Save Your Brain.

Lifestyle Changes Can Bring You Back to Being You.

Save Your Brain, Save Your Life.

Save Your Brain, Restore Your Life.

A Brain is a Terrible Thing to Lose.

Uh oh, this is a bad one: "It's a No-Brainer!" :oops:
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Re: Calling all Alzheimer's Activists!

Post by NF52 »

Julie G wrote:The name Alzheimer's Prevention Project is growing on me. It distinguished us from everyone else and really focuses on what we're proposing to do. Thoughts?
shenmen100 wrote:UCLA already has a study named Alzheimer’s Prevention Project, so I do not know if we could use that name- could be confusing.
https://www.semel.ucla.edu/app/alzheime ... -questions
I like the name also, yet it may be confusing for people who have signed up for the Alzheimer's Prevention Registry, run by the Banner Institute, which offers to match people with clinical trials. So far more than 345,000 have signed up, and presumably get emails from this site: https://www.endalznow.org/

In addition, a web-based study called Alzheimer's Prevention Trials Webstudy APT Webstudy is a collaborative of Brigham & Women's Hospital, Cleveland Clinic and USC funded by the National Institute on Aging to identify people ages 50+ based on ongoing assessments who could be eligible for targeted future trials. Started in 2018 and running through 2022 it has an ambitious goal of enrolling 200,000 people, according to their info on Clinical Trials.gov.

Both of those "projects" generally target people over the age of 50, so if the goal is to recruit people at a young age who have discovered their genetic risk, or worry about their family's risk (and the health of their parents) , then these competing names may be less relevant.
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