Saturday, January 5, 2013

The Alzheimer’s Advocacy Forum Celebrates Silver

Linda Fisher & Roberta Fisher,  Advocacy Forum 2012
When the Alzheimer’s Association began operations in 1980 they made it very clear that Alzheimer’s wasn’t just a joke for late night TV. What people previously thought of as senility had a name. Forgetfulness might not be mental lapses, it could be a disease that destroyed brain cells.

The mission of the Alzheimer’s Association is “A world without Alzheimer’s” with a twofold goal of finding a cure through research and providing support and services to the families dealing with Alzheimer’s and related dementia.

The Alzheimer’s Association is now the largest non-profit funder of Alzheimer’s research. They offer grants to scientists for promising studies. Along with the important funding of research, the families are not forgotten. The Association provides caregiver strategies to help them cope with daily challenges and provide a 24/7 helpline for those overwhelming moments. They have given a voice and a face to the 5.4 million Americans with Alzheimer’s.

My personal involvement with the Alzheimer’s Association began before Jim received a diagnosis. The first call to the Mid-Missouri Chapter assured me that this organization would help us. They threw out the life-line and we grabbed on and never let go.

Fast forward to April 2001—Penny Braun, executive director, of the Mid-Missouri Chapter invited me to attend the annual Alzheimer’s Public Policy with her. I immediately accepted. I had been a faithful Memory Day participant at the state level, and I was eager to take advocacy to the national level.

When we arrived in DC, cherry blossoms were in full bloom. The Forum was a whirlwind of activity and my head was spinning from the staggering statistics. There is something about visiting senators and representatives that make you want to know the hard facts to convince them that Alzheimer’s research is woefully underfunded. It doesn’t take long to discover that one of the most important jobs of an advocate is to tell a personal story. You provide the  answer to: Why are you here, and why do you care so much?

This year, the Alzheimer’s Advocacy Forum will celebrate its silver anniversary! Yesterday I received a personal email from Monica Moreno, director of early stage initiatives for the Alzheimer’s Association at their national office in Chicago. Congratulations on your nomination!” in response to Early Onset Alzheimer’s blog’s nomination for Best Health Blog of 2012 contest. If I win the contest and the $1,000 prize, I plan to help fund my annual trip to the Advocacy Forum.

Moreno continued to share some exciting news about the forum. “I was also thrilled to see that for the past 13 years, you have been an active participant at the Alzheimer's Association Advocacy Forum which is again being held in Washington D.C. this coming April. I think you'll be happy to know that in honor and recognition of our 25th anniversary of the Advocacy Forum, the Association is waiving the registration fee for every attendee!”

Free registration! Love it. I believe in the Forum enough that I have paid my own way for most of the years I’ve attended. Together, we can accomplish our goals. We’ve fought to keep funding for Alzheimer’s research though years of budget slashing. I am pleased that I was one of the Alzheimer’s advocates with boots on the ground advocating for the “National Alzheimer’s Project” and the “National Alzheimer’s Plan.” It is heartening to know that you personally asked for and received support for this important legislation.

One of the important aspects of advocacy is to work with legislators without regard to political party. I enjoy meeting with my senator, Claire McCaskill, and my representative, Vicky Hartzler. I’ve developed good relationships with the health aides too over the years. Most legislators like to meet personally with constituents, but sometimes it is impossible. Aides play an important role in getting legislation passed and are typically well informed.

Alzheimer’s can be a lonely disease, but one of the benefits of the forum is building close relationships with other advocates. At the very first forum, I met Jane, Kathy, Sarah, and Ralph. I bonded with these four caregivers in a special way. Each year, I’ve met special people that enrich my life.

We've accomplished much over the past twenty-five years, but there is still work to be done! I'll be in Washington, DC, April 22-24 for the silver anniversary celebration. Join us to continue the fight on Capitol Hill for legislation and funding for Americans with Alzheimer's and for their families.

copyright (c) January 2013 by L. S. Fisher

My Early Onset Alzheimer's blog has been nominated by Healthline for a contest between the best health blogs of 2012 with a $1,000 prize. Currently, I'm in the top ten out of 300+ blogs. You can vote via Facebook or Twitter daily between now and February 15. Please remember to vote every day because your vote really counts! It is easy to vote—simply follow the link below and click on the "Vote Now" button next to Early Onset Alzheimer's. If I win, I will use the prize money to fund attendance of my 13th consecutive Alzheimer’s Association Public Policy Forum in Washington, DC.