When I looked at
this week on my calendar, it seemed like it had been attacked by a magic
marker. Some days had as many as three events with only Wednesday sitting in
the middle of the week without a single notation.
Monday was a
red-letter day on my calendar because that was the day we local Alzheimer’s advocates
were meeting with Congresswoman Hartzler. Our meeting was scheduled for 10:30
at the Sedalia Fire Station. Jamie, a firefighter and a Walk committee member,
and I decided to rearrange the room so that it was more conducive to
conversation. We called it a square, round table setting.
The Congresswoman
arrived on schedule, and after introductions, we sat down to talk about
research funding and the BOLD Infrastructure for Alzheimer’s Act.
As Congresswoman
Hartzler’s ambassador, I thanked her for her support of Alzheimer’s research.
In the years I’ve traveled to D.C., I’ve seen funding increase from $400
million to more than $1 billion. The professional budget calls for $2 billion
to reach our goal of a cure or effective treatment by 2025. We are asking for
an increase of $425 million for fiscal year 2019.
We talked about how
Alzheimer’s is a public health threat because the burden is large—five million
Americans have Alzheimer’s disease. Because Alzheimer’s is a public health
issue, the Centers for Disease Control and Prevention (CDC) would collect data
on cognitive decline and lead the nations efforts to improve quality of life for
those with the disease and reduce the costs associated with it.
Alzheimer’s affects
not only the person with the disease, but also affects the caregiver. Several
caregivers shared their stories. My mom said, “I saw how stressed Linda was…every
day. She was working and taking care of Jim. She couldn’t sleep because Jim
would wander off in the night.”
Another advocate
shared how her grandfather’s personality changed and how things he said to her
grandmother stayed with her even after he passed away. Other caregivers told of
instances where the person with the disease outlived the caregiver.
We need to use a
BOLD approach to end Alzheimer’s! The BOLD Act establishes Alzheimer’s Centers
of Excellence; provides funding to state, local, and tribal public health
departments to promote early diagnosis; and increases collection and reporting
of data on cognitive decline. As our time drew to a close, I made the “ask.” Congresswoman
Hartzler said she would study BOLD (HR 4256) and give consideration to lending
her support. She praised our handouts and thanked us for keeping her informed about our legislation.
We had forty-five
minutes with the Congresswoman. As she was leaving, she hugged my
ninety-one-year-old mother and said, “When I grow up, I want to be you.”
Copyright © May 2018
by L.S. Fisher
#ENDALZ
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