JOAN’S BLOG – MARCH 4-7, 2010 – BRINGING YOUR MESSAGE TO WASHINGTON DC

For the third year in a row, I have the privilege of attending the Alzheimer’s Advocacy Forum in Washington, DC from Sunday, March 7 – Tuesday, March 10th.  You can read about the Forum, its purpose, and the schedule by clicking this link, but once again, I am asking for your input.

Although The Alzheimer’s Association makes the decisions as to what bills on which they want us to focus our lobbying efforts, our personal stories make the most impact with the legislators. I can attest to this from first hand experience. We are usually paired up in two’s, and have specific appointments with legislators and/or their aides to discuss the legislation we would like passed and why. The “why” is where you and I come in.

Last year, my partner discussed the legislative agenda, while I gave the personal, emotional side of the story. I talked about how Alzheimer’s Disease impacted my husband, myself, and our relationship. I emphasized the devastating effects of the disease as a “brain destruction” force, rather than a simple “memory loss” problem. And I told some of your heartfelt stories of emotional and financial loss.

I can tell you that the stories of Early Onset Alzheimer’s Disease made the most impact. It jolted them practically out of their seats. Many of the aides are straight out of college, and have not yet seen the other side of 25 years old. They are familiar with their grandparents’ Alzheimer’s Disease, but when they were told over and over again about the 40-55 year-olds who were afflicted with the disease, they were stunned and disturbed. It also had quite an impact on the legislators who are in their 40’s. They realized that they were at risk, not just their parents.

You may be skeptical that politicians pay any attention to a word we say, but the recent Social Security victory in which Alzheimer’s Disease was added to the compassionate allowance list, is proof that they do listen. If not for the efforts of advocates like Jay and Laura Jones, who testified, wrote letters, made phone calls, and were obstinately persistent, I doubt we would have achieved that success.

So I am asking you to tell me what YOU would say to a legislator if you were sitting across from them in their office, as I will be. I can promise you that I will relay some of your stories. You have the opportunity to be a “virtual” lobbyist through me. What would you tell them? What do you want them to know about how Alzheimer’s Disease has affected your life and the life of your spouse?

MESSAGE BOARD TOPIC – Joan is bringing your message to Washington DC.

Feedback to joan@thealzheimerspouse.com

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