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Younger-Onset AD or Other Dementia
Alz Foundation of America
They are okay and have some monthly
educational meetings. They get involved in many of the policies being created. They
also are more about the caregiver then those living with dementia. They may be
the second largest in the US that actually has a support desk to call into.
Thanks for the link, I had never heard of them....will check them out.
Foundations...tend mean a org formed for purpose of raise money...FYI.
There a growing need being expressed these days in many areas the dementia community the need for an org that there for US...help us in getting dxd, in supporting us while waiting for dx, supporting us post dx...that help us learn how live with it. In short, servicing the needs the people LIVING with dementia in all its various forms. The HOPE is that one the existing orgs like DAI will pick up on that and provide it (rather than have reinvent the wheel)...as I and others are growing concerned of the 100s of orgs sprouting up that all seem entirely miss the mark.
All one can do is hope. Again, thanks for the link.
I have looked at site....it much more easy navigate than the Alz Asso....and they have a nice teen program. I like them for caregivers and raise money that seems be going educate and for research. Which is admittedly, refreshing see. A very positive site over all. Other than the store (which also easy navigate) no thing really for us.
Again, thanks for the link and widening the view.
Michael...what do you know about
I also serve on LEAD. Lead is a
great private organization bringing all the companies and organizations together
to have common voice. They are doing some great things and it helps to get people
all on the same page. AA is one of the few folks who does not belong to it
which is a bit frustrating. In order to belong to them you must be a organization
and not just a person. They also charge a fee for being part if the team. I believe
there are about 90 companies now part of the group. Many of the AA’s that had separated
are part of them. They were actually started by Usagainstalzheimers, AA and AFA.
AA has pulled out which I really don’t like. I get a lot of my information from them which
is some of the best out there.
llee...I ran into LEAD when looking up the Foundation. I have known about the Foundation for a long time but thought a refresher check was in order.
There is another org which looks like it might be very PWD oriented. Maybe it could be a model for programs here.
The Alzheimer Foundation provides this "stages of Alzheimer's Disease":