Notes from the Alzheimer’s Association Advocacy Forum: Day 1, a celebration of success

From tonight's candlelight vigil

Greetings from the Alzheimer’s Association Advocacy Forum in Washington, D.C. The Forum got off to a rousing start this evening with a review of the past year’s advocacy success on the state and federal levels. Our National Board Chair started off with some words of motivation, reminding us that this Forum and our advocacy work year-round is an opportunity to be bipartisan in our ask for legislators to allocate just a few million dollars today to save billions tomorrow.

California was in full force, with 30+ advocates from around the state, including 20 from the northern California in addition to two advocates from Northern Nevada.

During the roll call of states, we heard success stories from around the country. I was particularly proud of our chapter, which reported on our press conference announcing the release of the California State Plan, which garnered great media coverage in addition to the fact that 130 advocates visited every legislative office on Advocacy Day to encourage our policy makers to support Alzheimer’s legislation. Likewise, Nevada reported success, including an Advocacy Day during which 50 percent of all legislative offices were visited, resulting in finding legislative supporters who will help us start the process for a Nevada state plan on Alzheimer’s.

We also met our new National Director of State Affairs, Randi Chapman. On board with the Association for just three months, she has an ambitious five-year vision: every state will have a state plan on Alzheimer’s disease and adopt uniform adult guardianship legislation.

The Maureen Reagan Outstanding Advocate Award is granted annually to an advocate who shows outstanding advocacy leadership. This year’s winner Laura Jones from the Southeastern Florida Chapter is a caregiver for her husband, who has young onset Alzheimer’s. She and her husband shared their story with key legislators and decision makers who were responsible for making people under 65 with Alzheimer’s eligible for Social Security Compassionate Allowance. “30 years ago, cancer was in the shadows, but it’s not anymore,” she said during her acceptance speech. “I want the same for Alzheimer’s. I promise you that I am not done.”

Vice President of Public Policy Robert Egge shared four major successes from the past year on the Federal level:

1.) A section of the Healthy People 2020 report dedicated to Alzheimer’s disease – which is key to influencing allocation of funds for research and public health; past reports did not mention Alzheimer’s.

2.) The inclusion of annual wellness visits and cognitive screening as part of the Affordable Health Care Act – a new Medicare benefit that ensures mandatory reimbursement for the evaluation of cognitive impairment.

3.) Creation of a new Alzheimer’s research program at the Department of Defense, starting at $15 million a year.

4.) National Alzheimer’s Project Act (NAPA). Visit, which provides a forum where people can give their input on what struggles NAPA should address.

He also told us more about the Alzheimer’s Impact Project (AIM), which works in partnership with the Alzheimer’s Association to make Alzheimer’s a national priority. It is a 501(c)4 organization that – unlike the Alzheimer’s Association – can lobby Congress on behalf of Alzheimer’s families. To learn more, visit, where you’ll find a wealth of information, including a legislative scorecard about where your legislator stands on Alzheimer’s legislation.

Finally, at the candlelight vigil, we shared an inspiring evening together, lighting a candle in honor of all families coping with this disease. To join us and light a virtual candle, visit

For more photos from today visit us on flickr: 2011 Advocacy Forum Day 1