Monday, August 31, 2009

Long-term Care Services and Supports

The message -- that Advocacy is both rewarding and straightforward -- comes through in the following dispatch from Gabrielle Corey in West Virginia:

“Justin Knabb and I (decorated in purple “STOP Alzheimer’s NOW” stickers!) headed to a town hall meeting in the beautiful Erma Byrd Gallery of the University of Charleston where WV Senator Jay Rockefeller was scheduled to talk about health care reform. After Sen. Rockefeller discussed his health care reform initiatives, he opened the floor up for questions.

“Justin got to ask the Senator if he was in support of (and would co-sponsor) the Community Living Assistance Services and Support (CLASS) Act. Senator Rockefeller adamantly announced his personal support for the bill but said that the Finance Committee had declined support of it and he would therefore not become a co-sponsor.

“Unfortunately, Justin and I had to peace out for a Memory Walk meeting, but we were told by one of our advocates that Senator Rockefeller closed the meeting by mentioning his mom’s struggle with Alzheimer’s. Although Senator Rockefeller declined support for the bill, Justin and I were pleased that we got to ask the question so Senator Rockefeller knew that WV cared about including long-term care in health care reform efforts.”

Our thanks to Justin and Gabrielle. Their story makes another important point about advocacy. Just the act of asking a question often prompts our Congressmen to talk about Alzheimer’s. And when that happens, it often stays on their minds.

Senator Rockefeller is a Congressional Alzheimer champion. He is a long-time advocate of accessible and quality healthcare and is recognized as one of the Senate's strongest champions for health care reform. Senator Jay Rockefeller and Sharon Percy Rockefeller were the recipients of the sixth annual Alzheimer’s Association Sargent and Eunice Shriver Profiles in Dignity Award.

He is also a co-sponsor of the Alzheimer’s Breakthrough Act (S.1452/HR 3286).

Act Now!
Tell your member(s) of Congress to sign on to the Alzheimer’s Breakthrough Act:

Robert Egge

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Thursday, August 27, 2009

Alzheimer's Breakthrough Act

In my last entry, I described how the work of an Alzheimer’s advocate was continuing to have an impact years later. Over the next few days, I’ll be sharing recent reports from advocates around the country who are having an exciting, positive influence during the August recess when their elected officials are back home in district.

The first example comes from Massachusetts at an event hosted by one of Alzheimer’s strongest and most steadfast Congressional champions, Congressman Ed Markey. Here’s the story as related by Jennifer Carter:

“Congressman Ed Markey held a healthcare reform forum at the newly-opened Markey Senior Center (named after his parents) in his hometown of Malden, MA on July 12th. It was an event to both ask questions of the Congressman about healthcare reform as well as to express specific concerns about the different bills and issues being discussed in Congress.

“There were about 40 different civic groups, community organizations and agencies present that evening and I was fortunate enough to have ample opportunity to talk about the importance of Alzheimer’s disease and protecting those with the disease.

“I asked about research funding as well as ending the Medicare two year waiting period and was well received, with support from the other agencies and organizations present! The Congressman also talked about his experience with his mother who had Alzheimer’s disease and his frustration with a healthcare system that would not allow more community-based care and home care. He also spoke about what he referred to as the need for CPR in healthcare- Coverage, Prevention and Research- in order to make the US health system really work for all residents in the US. Over all, the experience was wonderful – Congressman Markey, a long time supporter of the Alzheimer’s Association, is a true supporter of all the Association stands for – research, early diagnosis, quality care and dignity!”

Jennifer makes a great point that we often overlook – advocacy is fun. It’s also more straightforward than we often realize.

But don’t wait to take action!

Congressman Ed Markey is leading the fight against Alzheimer’s. He introduced the Alzheimer’s Breakthrough Act (S.1452/HR 3286) earlier this year, tell your member(s) of Congress to sign on!

Act Now:

Robert Egge

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Wednesday, August 12, 2009

Your VOICE Makes a Difference

I had the privilege of joining the Alzheimer’s Association this past April to help push forward our public policy agenda with Congress, the Administration, and state governments across the country. I couldn’t have joined at a more interesting time. But, like you, we don’t do this work because it’s interesting. We do it because it’s a mission. We’re advocates because we recognize how important it is for our country to move off the mark, and respond to this disease with energy, focus, and determination that’s equal to Alzheimer’s devastating impact.

To be candid, so far our federal government hasn’t done so. However, thanks to the tireless efforts of Alzheimer’s volunteer advocates and committed champions in Congress, we are starting to see encouraging signs that momentum is building in this direction.

One recent conversation with Senate Majority Leader Harry Reid indicates how volunteer advocate efforts and Congressional champions work hand in hand. In this meeting to discuss how we can secure more Alzheimer research funding, Senator Reid mentioned how his views on Alzheimer’s were shaped several years ago, well before he was leader of the Senate. Senator Reid was told by a Nevada doctor about his first hand experiences caring for Alzheimer patients. The doctor also made a prediction the Senator never forgot – if we don’t find a way to treat this disease, it will bankrupt the nation. The doctor was right, of course, and his conversation set the stage many years later for us to have a very productive meeting with one the most powerful elected officials in the nation.

What’s the point? Well, one point is that the work of our grassroots advocates, like the Nevada doctor, is extremely important. More than you may know. You might not see the impact the day of a visit, a phone call, or an email, but it can last for years to come and add critical momentum to all our efforts.

Have a moment to take an action right now? Please urge your Members of Congress to co-sponsor the Alzheimer’s Breakthrough Act (S.1492/H.R. 3286). Then, call your local Alzheimer’s chapter to let them know that you want to participate in visits to your local congressional offices. Every visit, every conversation, matters.

I hope you’ll keep visiting this blog, and share it with your friends. We’ll be using it to keep you up to speed on our efforts. We also hope you’ll leave a comment and let us know how your efforts are going as well.

- Robert Egge
Vice President, Public Policy and Advocacy
National Alzheimer's Association

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Location: Chicago, Illinois, United States

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

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