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    • CommentAuthorSunshyne
    • CommentTimeDec 20th 2008
     
    From the Alzheimer's Association:

    Help Put Alzheimer’s Issues on President-Elect Obama’s Health Care Agenda!

    President-elect Obama is asking Americans to tell him why health care is important to them and what should be included in health care reform. This is a great opportunity to tell the President your personal story and about the devastation caused by Alzheimer’s disease to millions of families.

    To make your voice heard, go to http://change.gov/page/s/healthcare and complete a brief form.

    Your personal story will help the Association advance its health care priorities to the new Administration. In your story, remember to mention at least one of the following points:

    - Increase access to affordable health and long-term coverage for all people living with Alzheimer’s disease,

    - Improve support for Alzheimer caregivers,

    - Establish coordinated care for Medicare beneficiaries with dementia and other chronic conditions, and/or

    - Increase federally-funded medical research.

    Submit your story today!
    • CommentAuthorAdmin
    • CommentTimeDec 20th 2008
     
    Believe me, those stories do get read. They are sorted by State, and presented to the delegate from each State to present to their senators and representatives during the Alzheimer's Public Policy Forum in DC. In 09, the Forum is in March, and I am going again as a Florida delegate. We personally handed over a folder of your stories to each legislator with whom we met.

    I didn't know what I was getting myself into last May when I decided to go to the DC Forum. Now that I know what is expected, I will be better prepared.

    joang
  1.  
    Done
    • CommentAuthorDarleneC
    • CommentTimeDec 20th 2008
     
    I meet Senator Ken Salazar here in Colorado while I was campaigning for Obama. He took part in the forum in Washington last Spring. I encouraged him to keep working for our cause ( his father had Alzheimer's). Write to your state Senators and representitives and let your voices be heard. Tell your story on the Health Care Agenda. We need to be verbal!!!
    • CommentAuthorAdmin
    • CommentTimeDec 20th 2008
     
    For those of you here in Florida, I met Senator Nelson when I was in Washington, and he is very receptive to our cause. Senator Martinez's aide was also quite receptive - his grandfather had Alzheimer's Disease - but he said what everyone else in Washington said at that time - the government was basically at a standstill until the election and a new administration came in. Well, it's coming in January. I realize President-Elect Obama has a HUGE mess on his hands, but health care is one of his priorities. We have to put Alzheimer's Disease at the top of the list.

    Remember the 7 degrees of separation theory- with Alzheimer's Disease, it is no more than 2 degrees of separation - someone knows someone who has been affected by the disease, and that includes legislators.

    joang
    •  
      CommentAuthorStarling*
    • CommentTimeDec 21st 2008
     
    When we began to go public about my husband's condition, it turned out that almost ALL of my daughter's friends were dealing with a parent, grandparent, aunt or uncle who had the disease. In some cases every one of them knew that person in addition to knowing my husband. It really is a 2 degrees of separation disease.
    • CommentAuthorSunshyne
    • CommentTimeDec 22nd 2008
     
    ttt
    • CommentAuthorSunshyne
    • CommentTimeJan 7th 2009
     
    The Obama team now has a new website:

    http://change.gov/openforquestions

    Search for questions on Alzheimer's and VOTE for the ones you agree with.

    Add your own questions.

    Let's kick up a ruckus, folks!
    •  
      CommentAuthorStarling*
    • CommentTimeJan 7th 2009
     
    Search for both Alzheimer's and dementia. There are some questions under dementia that are not the same as the ones under Alzheimer's. Let's remember that some of our LOs don't have Alzheimer's, but we all have similar problems.
    • CommentAuthorSunshyne
    • CommentTimeJan 8th 2009
     
    THANK YOU!!! Why didn't I think of that!!!
  2.  
    I'd like to put in a plug for one of our State senators, Barbara Mikulski. Her Dad had AD and she because of her family's experience, she has been Congress' most vocal advocate for caregivers and sufferers of the disease. She was the person responsible for a bill that became law--I think it is called something like the Spousal Impoverishment Act--that is the reason spouses are allowed to keep their home and still have their LO's qualify for Medicaid. In 2007, she introduced a bill called The Alzheimer's Breakthrough Act, which called for a huge increase in funding for AD research, caregiver support, and public education about prevention. Sadly, it never became law. However, I know she will never tire in her efforts for all of us--I heard her speak about what the disease did to her family--she gets it.
  3.  
    Sunshyne--Thanks for the heads up on the Obama website--I did what you suggested.