Alzheimer's Advocacy Forum

Our thanks to Kate Mulgrew, an outstanding Alzheimer’s advocate who effectively makes the case that we must act now to overcome Alzheimer’s disease.

Check out Kate’s opinion piece that was posted on CNN.com.

All of us can do what Kate has done. Talk to your friends, family, and co-workers. Write to your local papers and tell them why Alzheimer’s needs to be a national priority. Call the district office of your congressman and explain the impact this disease has had on your loved ones. It’s the many voices that together that will make the difference. Each conversation, each call, each letter matters.

Best of all, register to join us in Washington, DC for the Advocacy Forum. We’ll train together as advocates, discuss what needs to be done and how to make the case, and then we’ll do it. On the last of the three days, we’ll head to the Hill and make our case directly to our Senators and Representatives in Congress. Our advocates consistently tell us what a rewarding time they have meeting new friends and advancing a cause that means so much to them.

Learn more about the Advocacy Forum or sign up today! Together we can take action and change the course of this disease.

-Robert Egge

Big news about the Breakthrough Act

When the Breakthrough Act was introduced in 2007, it took 19 months to gain 92 cosponsors and the bill was never brought to a vote.

The Alzheimer’s Breakthrough Act (S.1492/H.R.3286) was reintroduced in July. Over the last five months, efforts by Alzheimer advocates have helped bring 101 cosponsors to support this bill.

Although we still have a long way to go in the process of the Breakthrough Act becoming law, we need to keep up the momentum to add more cosponsors to this bipartisan bill.

Check out the list of current cosponsors here. If your members of Congress are not on the listed, ask them to sign on today!

- Robert Egge

Ask Congress to secure Alzheimer’s funding

It’s a busy time in Washington. In addition to health care reform, Congress is busy finishing the Appropriations bills in both the House and the Senate.

We want to make sure the bills include funding for Alzheimer’s disease research at the National Institutes of Heath (NIH) and funding for the Healthy Brain Initiative at the Centers for Disease Control (CDC).

Write your members of Congress and urge them to support Alzheimer’s research.

Check out our Federal Update for more details on Alzheimer’s-related provisions in health care reform.

-Robert Egge

Today is World Alzheimer’s Day.

One way the Alzheimer’s Association is marking this day is through the release of the 2009 World Alzheimer Report. The report shows that the number of people with Alzheimer’s and other dementias is rising substantially worldwide. The impact on families, governments, and national healthcare systems will be immense, and it is essential that governments respond to this significant global public health threat now.

The Alzheimer's Breakthrough Act of 2009 (S. 1492/H.R. 3286), introduced in the Senate by Senators Barbara Mikulski (D-MD) and Christopher "Kit" Bond (R-MO) and in the House by Representatives Edward Markey (D-MA) and Christopher Smith (R-NJ), seeks to increase funding for Alzheimer’s at the National Institutes of Health (NIH) to $2 billion which would be a significant step in restoring momentum in the pursuit of better diagnosis, prevention and treatment.

The legislation also creates a National Summit on Alzheimer's, which would bring together researchers, policymakers and public health professionals to discuss the latest promising research avenues in Alzheimer's disease.

Watch this clip from the TODAY Show interview with Alzheimer’s Association President and CEO Harry Johns and actor and Alzheimer Champion David Hyde Pierce:

Visit msnbc.com for Breaking News, World News, and

Help fund breakthroughs in Alzheimer's disease research while providing more support to caregivers. Tell your members of Congress to sign on to the Breakthrough Act.

-Robert Egge

Local Health Reform Action Wraps Up

This weekend wraps up a month of in-district action where advocates asked our federal officials to pass health care reform this year that includes long-term services and supports for people with Alzheimer’s and to co-sponsor the Alzheimer’s Breakthrough Act.

I want to personally thank the thousands of advocates who carried our messages into town hall meetings and district offices. Our Washington, DC staff will follow up on all of your efforts.

Congress returns to Capitol Hill after Labor Day to move forward with health care reform legislation in September with a goal of finishing the process by the end of October. Keep an eye out for more on the progress of our priority issues in the weeks to come.

One final point – Advocacy in August wasn’t just about Congress. In this account, Liz McConnell reflects on her advocacy on behalf of Alzheimer’s with the President.

“Since attending the Obama Town Hall Meeting in Portsmouth, New Hampshire I continue to have hope. I saw hope in the faces of most of the general public who attended, the Obama staff, volunteers and the President himself. Those attending are hoping for reform of the healthcare system, and my hope is that reform will include changes in attitudes and policy regarding long-term care and increases in research funding for Alzheimer's Disease.

I came to the event as a volunteer, but also as an advocate. I want people to think broadly about healthcare reform, and include Alzheimer’s disease in that equation. I spent the first hour before my volunteer duties began distributing purple ‘Stop Alzheimer’s Now’ stickers to the waiting crowd. Inevitably, people tell me their stories of loved ones diagnosed or lost to Alzheimer’s. When they tell me their stories, they make connections with changes that must occur, and often talk about their fears of the increase in numbers of people who will be diagnosed. Without a change in the system, their fear is that they might one day be a part of those greater numbers of people diagnosed in a broken healthcare system.

During the event, there was one question relating to Medicare and the savings the administration is hoping to gain through greater efficiencies within the system to help pay for part of the cost of healthcare reform. There was concern expressed that the savings would be gained through taking away currently offered services. President Obama made assurances that the cost savings will come from efficiencies and not cuts in service.

As an advocate, I want to make sure the President keeps that promise. Alzheimer’s disease should be foremost in his mind when it comes to reform. My opportunity to remind the President of that came at the end of the event. When the President shook my hand I held onto his right hand and placed a purple ‘Stop Alzheimer’s Now’ sticker in his left hand. He put the sticker in his pants pocket.”
Who knows what he thought when he pulled that sticker out later? I like to think he spent at least a couple moments thinking about what can be done to do just that: “Stop Alzheimer’s Now”.

So, advocacy is critical to our success. But it’s also often fun, and surprisingly straightforward. If we all engage in Advocacy, we will much sooner get to our vision of “A World Without Alzheimer’s”.

Keep up the good work!
- Robert Egge

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: http://www.alz.kintera.org/breakthroughact_actionalz

Thanks,
Robert Egge

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: http://www.alz.kintera.org/breakthroughact_actionalz

Thanks,
Robert Egge