Calling all Alzheimer's Activists!

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Re: Calling all Alzheimer's Activists!

Postby Julie G » Sun Aug 25, 2019 9:48 am

Alzheimer's Prevention Project is still my top pick for a variety of reasons, but there appear to be many organizations sharing that name like this one. We want to stand out. What makes us unique is that we're essentially patient advocates who are living examples that an Alzheimer's prevention lifestyle is doable and yields many health benefits beyond improved cognition. I'd really like our name and project to make that clear.
I love INSTEAD, but worry about being locked in to the number Nine. What if new strategies emerge in the future?

Me too. It's short and memorable. It also denotes hopefulness and a better tomorrow. I initially suggested "nine" to make this seem manageable, but certainly planned to work more evidence based information into our message, That said, we needn't stick with "nine". How about "new" or "novel": Incorporating New Strategies To End Alzheimer's. My original tagline was I.N.S.T.E.A.D: Act now for a BetterTomorrow. We can probably do better...
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.

To clarify, the ultimate goal is to target EVERY everyone in an age appropriate manner. We may initially have to prioritize our focus, but we hope to encourage a cognitive check-up (or "check-in") at every medical wellness check-up or physical exam and as a part of the educational curriculum. Huge thanks to all for sharing your thoughts. Keep your ideas coming!

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Re: Calling all Alzheimer's Activists!

Postby Julie G » Wed Sep 04, 2019 8:23 am

Here's a great read by the CDC discussing and defining disease prevention. I think we know enough to make a case for primary, secondary, and even tertiary prevention.

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Re: Calling all Alzheimer's Activists!

Postby circular » Tue Sep 17, 2019 12:32 pm

I'm not sure where this decision making stands, but I thought I'd share something from a business mag in the Subaru service department waiting area. It's about a new branding scheme for a local business and says:
... the new branding effort goes far beyond simply marketing. 'We want people to embrace and understand it. This brand isn't just pictures and a tagline," she said. "A brand is an emotional reaction." [Emphasis added]

Of course this may go without saying, or not, and there are all kinds of articles online for businesses that are branding or rebranding that a non-profit like apoe4.info can consult. I just thought that articulating the 'emotional reaction' part in order to be very conscious of it might be useful.

I personally think somehow blending the concept of prevention with optimization would be good but may not be feasible. Prevention only goes so far and doesn't convey as much forward motion to me. It risks being a bit uninspiring on its face to the wider audience outside of apoe4.info, who will encounter countless temptations in the other direction far more often than apoe4.info's message. I realize prevention really is the major piece for us though, and where prevention measures end and further optimization steps begin is an unknown tipping point for each individual.

Just thinking out loud ...
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: Calling all Alzheimer's Activists!

Postby LeeRodriguez » Wed Sep 18, 2019 1:28 am

I live in SW Missouri and would like some guidance about how to reach people

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Re: Calling all Alzheimer's Activists!

Postby donbob » Wed Sep 18, 2019 7:37 am

LeeRodriguez wrote:I live in SW Missouri and would like some guidance about how to reach people

Near Rolla. In what way are you interested in reaching people?
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Re: Calling all Alzheimer's Activists!

Postby floramaria » Wed Sep 18, 2019 10:18 am

LeeRodriguez wrote:I live in SW Missouri and would like some guidance about how to reach people

Hello LeeRodriquez, and welcome to the ApoE4.Info community. I am also unclear about how you want to reach people. Are you looking to meet people in you area in person? If so , you could post under Meet-ups, putting Missouri in the topic line. People are more likely to see something posted there than here, where it is buried in another thread.
Since you are new to the site, there are a few resources that may be helpful. The Primer is a great place to begin. It is written by a physician member and will give you an overview of the risks associated with the ApoE4 allele, and also prioritized steps for minimizing those risks.
How-To Get the Most out of the ApoE4.info websitewill give you tips on replying to posts, sending private messages, and searching topics of particular interest. It is a very useful guide, and as its name says, will help you get the most benefit, tailored to your own needs and/or interests.
We’d also like to invite you to introduce yourself in the Our Stories section.
You will find a supportive community here. We are happy you have joined us.
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Re: Calling all Alzheimer's Activists!

Postby Julie G » Wed Sep 18, 2019 10:56 am

Huge thanks to all who continue to post here. We’d love everyone’s help and participation. While I’ve been very busy with work deadlines, this project is never far from my mind. I’m currently leaving Norfolk after spending a few days with Stavia and we’ve been brainstorming...

I’m rethinking the overall tenor and approach for this project keeping the same end goals in mind. It might be interesting to embrace our identity as health care disruptors, with skin in the game, as opposed to trying to play within the system. There’s literally hundreds of mainstream organizations with very similar goals as ours. Being authentic gives us a unique voice in a crowded field.

Instead of the Alzheimer’s Prevention Project, Stavia and I are leaning towards F*uck Alzheimer’s for a project name. (Sadly, it’s taken, but you get our general gist.) Have we lost our minds?

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Re: Calling all Alzheimer's Activists!

Postby ru442 » Wed Sep 18, 2019 11:05 am

Julie G wrote:Huge thanks to all who continue to post here. We’d love everyone’s help and participation. While I’ve been very busy with work deadlines, this project is never far from my mind. I’m currently leaving Norfolk after spending a few days with Stavia and we’ve been brainstorming...

I’m rethinking the overall tenor and approach for this project keeping the same end goals in mind. It might be interesting to embrace our identity as health care disruptors, with skin in the game, as opposed to trying to play within the system. There’s literally hundreds of mainstream organizations with very similar goals as ours. Being authentic gives us a unique voice in a crowded field.

Instead of the Alzheimer’s Prevention Project, Stavia and I are leaning towards F*uck Alzheimer’s for a project name. (Sadly, it’s taken, but you get our general gist.) Have we lost our minds?

LOL.... oh well we can substitute another similar verb! And I like the disruptive angle, we are doing things that are not mainstream that work and people should have this knowledge to use. Look at what the Anonymous movement did, exposing abusive groups for what they are.
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Re: Calling all Alzheimer's Activists!

Postby floramaria » Wed Sep 18, 2019 11:17 am

Julie G wrote:Instead of the Alzheimer’s Prevention Project, Stavia and I are leaning towards F*uck Alzheimer’s for a project name. (Sadly, it’s taken, but you get our general gist.) Have we lost our minds?

:lol: While F*ck Alzheimer’s is already taken , I doubt that F*uck Alzheimer’s is :lol:
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Re: Calling all Alzheimer's Activists!

Postby circular » Wed Sep 18, 2019 11:46 am

Julie G wrote:Instead of the Alzheimer’s Prevention Project, Stavia and I are leaning towards F*uck Alzheimer’s for a project name. (Sadly, it’s taken, but you get our general gist.) Have we lost our minds?

Well you certainly are on the same track as I proposed from the example I saw in the article the other day, to inject it with some emotional punch :lol:
ApoE 3/4 > Thanks in advance for any responses made to my posts.


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