Alzheimer

Early Onset Alzheimer’s – Encourage, Inspire, and Inform: Alzheimer’s Impact Movement (AIM) Advocacy Forum 2021

 

The AIM
Forum started on a Monday morning with a zoom meeting with Congresswoman
Hartzler’s office. I don’t know why, but it made me nervous to know I would be
leading the first meeting that morning, on Zoom, no less.

 

When we
go to Capitol Hill for the AIM Advocacy Forum, I usually get to ease into the
meeting with the Congresswoman. First, we have training and role-playing. When
we go to the Hill we usually meet with the senators first and their ambassador leads
the meeting.

 

The
night before the meeting, I reviewed our federal priorities:

  1. Comprehensive Care for Alzheimer’s Act (CCAA) | H.R.2517 • S.1125
  2. Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act |
    H.R.3085 • S.1548
  3. Appropriations – $289 million increase for Alzheimer’s research at NIH,
    and $20 million to fund BOLD.
  4. Alzheimer’s Caregiver Support Act (ACSA) |
    H.R.1474 • S.56

I read
through the fact sheets and thought about which of my experiences could relate
to the different pieces of legislations. When we are in DC, AIM emphasizes the
most important aspects of being an Alzheimer’s advocate: (1) Tell your story,
(2) Remember to make the ask, and (3) wear comfortable shoes.

 

Along
with the participation of other advocates, the meeting with the legislative
aide for Congresswoman Hartzler went smoothly.

 

The
remainder of the Forum included Zoom calls with both of our senators, a
Webinar, and a Congressional Hearing on Alzheimer’s.

 

The
week passed by quickly, but I had to be on alert so that I wouldn’t miss
anything. For some reason all my invites were an hour early, which I guess is
certainly better than being an hour late. I accidentally dropped in on another
meeting before I realized the time was incorrect on my invites.

 

Zoom
meetings are good and bad. I didn’t have to spend days trying to decide what to
pack. I didn’t have the hassle of planes, taxis, hotels, and transportation to
and from the airport. On the down side, I really missed hanging out with my
friends, especially Sarah, Kathy, and Jane.  

 

Advocates
know how important it is to advocate for families affected by Alzheimer’s
disease. The Alzheimer’s Impact Movement has been a game changer for how we
communicate with our legislators. They give us the correct tools to make our
voices heard on Capitol Hill.

 

I was
pleased to do my part. I was able to tell my story. I remembered the “ask.”
Throughout the virtual forum, I always wore my comfortable shoes.

 

Copyright
© May 2021 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ


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