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2015 Alzheimer’s Association Advocacy Forum Recap Part 2

This is part two of a two part recap post. You can read part one here.


Finally, Wednesday came and the energy from the last two days was at its peak. Fortunately, my first legislative visit wasn’t until 12:45 p.m. so I was able to sleep in for an extra hour or two and catch up my beauty rest.

For my first meeting, I accompanied our Dallas chapter local policy director, Clarissa, to see Representative Michael Burgess [R-TX]. We met with one of his staff members who had attended the Alzheimer’s dinner the night before and therefore was familiar with the staggering statistics we shared and the urgent need for support.  Clarissa did a great job of sharing the numbers and I shared my story. We make a great team!


For the rest of the day I was on my own. I had just enough time to rush over and hear the beginning of the Senate Special Committee on Aging hearing. The committee is chaired by Sen. Susan Collins (R-ME) and ranking member Sen. Claire McCaskill (D-MO). The senators were joined by several of their colleagues who trickled in throughout the hearing. It was promising to see more representatives in attendance this year than last. At last year’s hearing advocate Seth Rogen gave his testimony (which has since gone viral) about his mother-in-law’s Alzheimer’s journey to TWO senators. Yes…TWO! Click here to see Rogen talk about the experience.

The 2015 standing room only hearing was filled with purple sashes and a groundswell of support.


B. Smith and her husband Dan Gasby both gave emotional testimonies about how the disease has affected their lives. I love that Mr. Gasby included a Kanye West/Jay Z lyric from “No Church in the Wild” in his remarks. Gasby summed up this battle perfectly with a quote from the popular song – “The ‘pain ain’t cheap’ for the five million Americans living with Alzheimer’s disease.” An exert of just Mr. Gasby’s portion can be seen below.  The entire hearing is actually really informative and can be seen here.


After the hearing I rushed back across “the hill” to the Senate building for my solo visit with my local representative, Congresswoman Eddie Bernice Johnson.  She was not available so I met with Carrie, her Senior Legislative Assistant. Apparently, due to tight schedules, meeting with legislative staff is a common occurrence, so it did not come as a surprise.  I will admit I was a little nervous. Most visits were being made with small groups of people and here I was on my own.  But I was well prepared, so I let my passion and my knowledge lead the way. Rep. Johnson is a longtime supporter of this cause, so while I shared my story and updated Carrie on the numbers, it was not the sales job it could have been. Representative Johnson will be writing a letter to the appropriations committee in support of the $300 million increase in funding to the NIH as requested. She co-sponsored the Hope Bill when it was originally presented and intends to continue her support.  Success!


Spending time with more than 1000 people who believe in the same cause as you, fighting the same battle and understanding the same struggles is empowering. I saw people of different ages, races, and genders, who shared a common bond, come together from all over the country to Washington, D.C. to put in work. This experience really brought to light that this is not a party issue. It’s not a blue issue or a red issue. It’s a purple issue. One that effects everyone, Democrat, Republican or otherwise.


After a very long three days of constant on-the-go activity, Wednesday night I had an opportunity to catch up with some girlfriends for dinner and drinks and to fill them in on my experience. It was the perfect ending to a great trip. It’s always great to see familiar supportive friends.


The 2015 Alzheimer’s Association Advocacy Forum was an amazing experience and I am so glad I decided to go.  I feel so much more knowledgeable about how the legislative process works, and the numbers and details behind what will be needed to make progress in fighting this disease. It also feels empowering to know that as caregivers we are not in this alone. With recent legislation, breakthroughs in research, and increased funding (although we still have a long way to go) the momentum is moving and the tide is turning. It will be up to us, as advocates, to push us over the tipping point.

I had no idea what to expect going into the experience and came away with much more than I could have ever imagined. Next year’s Advocacy Forum will be held at the Washington Marriott Wardman Park, April 4-6, 2016. I plan to attend. I hope you will join us.

Do you have questions about the forum or the legislative initiatives currently on the table? Leave a comment below and let me know, and I will do my best to answer.

#Advocacy #Alzheimers #Awareness

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