Re: Calling all Alzheimer's Activists!
Posted: Sat Aug 10, 2019 12:12 pm
...
We will miss you and hope you can make the next one.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!
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: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!
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).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?
My petulant response is that the medical profession won’t give this advice, so how could our message possibly be construed as medical advice?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.
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 ideaJulie 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)