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Advocating. Raise money ALZ walk in Sept.
Posted: Saturday, May 9, 2015 12:08 PM
Joined: 4/7/2015
Posts: 482

I want to start advocating. Scream out loud and say..... "People... Wake up and see this disease... It's not all about older adults.... Stop the stigma!!"
My DH (vascular) and our 13 yr old daughter DO NOT want it to be "public". It's all so new. I'm just pissed off in general.
I want to start raising money for the walk in September. If I do then people will obviously connect the dots... to our family.
I will honor my family's wishes but I want to "do something".
My older kids age 22 and 25 don't live near. I would like them to fight with me. Since we are early on people don't "see it". I do every day.
Why us???

Mimi S.
Posted: Saturday, May 9, 2015 12:55 PM
Joined: 11/29/2011
Posts: 7029

Do contact your local Alz. Assoc. (call our help line 1-800-272-3900.) Get the contact info for your local chapter.

Ask for the contact information for the team closest to you.

If there is none close to you, you can form your own. I did.

Write a letter about why you are forming your own team. You can be personal, but probably not until the rest agree with you.

Then once you sign up, there's a spot to put that letter, Possibly a photo of you or your family. Then you input the e-mail address of all your friends and relatives. You can even post on FB if you want.

Once the family agree to go public, you can also contact local media and write letters to local newspaper for publication.

There is a controversy about disclosing. I did immediately, but then I was not Early Onset.

Some felt they (the one diagnosed) lost friends after the disclosure.