The first training session for ambassadors began
immediately following lunch on Monday. The program began with an exercise.
Everyone was asked to shout his or her name. Of course, the result was a loud, indecipherable
noise. Yet when everyone whispered in unison “Alzheimer’s is the most expensive
disease in America,” it was easily understood. This demonstrated the impact of
everyone being on the same page and delivering the same message.
Our mission was for Alzheimer’s advocates to deliver our
federal priorities to our senators and representatives.
1.
Increase
the commitment to Alzheimer’s research by $300 million. The current level of
investment is $586 million. Even with the increase, this amount is far short of
the $2 billion annual estimate to implement the steps toward meeting the goal
of a cure or effective treatment as set forth by the National Alzheimer’s Plan.
2.
Co-sponsor
the Hope for Alzheimer’s Act. During the Forum, the Act was re-introduced with
a focus on care planning and documentation of medical records. This act is
consistent with the National Alzheimer’s Plan
The cost of caring for individuals with Alzheimer’s is a
staggering $226 billion. One in every five Medicare dollars is spent on people
with Alzheimer’s disease. These numbers will only continue to increase as the
baby boomers age. By 2050, the cost of Alzheimer’s care is expected to reach $1.1 trillion per
year. The only way to avoid this pending economic crisis is to find an
effective treatment or cure for Alzheimer’s disease.
Research today is exciting and we seem to be on the cusp of
finding the key to unlock the elusive cure for Alzheimer’s. New studies have
shown great
promise. New technology allows scientists to see beta amyloid plaques and tau
tangles in living brains. Now, the effectiveness of treatments can be measured
through this imaging.
A breakout session on social media showed us how to use
tools provided by the Association to share highlights of the session via social
media—Twitter and Facebook. We participated in a “Thunderclap” that released
hundreds of tweets and Facebook posts as we began our Hill visits. The
Association also re-tweeted any tweets containing #ALZFORUM or #ENDALZ. During
the National Alzheimer’s Dinner, tweets were displayed on the screens,
including several of mine.
All fifty states were represented during the roll call of
the states. The most poignant moment during the roll call was an advocate
accompanied by his wife who had Alzheimer’s. My heart went out to both of them.
Dr. David Satcher, former U.S. Surgeon General presented the
keynote. He focused on leadership and teamwork. He said, “everyone teaches and
everyone learns.” Dr. Satcher said,
“Leadership is like a relay race.” It doesn’t just depend on how fast you run,
but whether you have the baton at the finish line. “If you drop the baton, the
race is over.” He read a poem his wife, Nola, had written for their wedding
reception, “I’ve Never Been Here Before.” Nola was diagnosed with Alzheimer’s
fifteen years ago giving a new meaning to the poem.
Periodically, throughout the meeting, advocates and people
with dementia would tell why they were advocates. The most delightful person to
speak was Amy Shives. She said she was diagnosed at fifty, as was her mother,
with dementia of the Alzheimer’s type—atypical. She never considered herself to
be typical anyway. She said that people with Alzheimer’s did not like to be
called “sufferers” because they are people, not the disease. “If you’ve met one
person with Alzheimer’s; you’ve met one person with Alzheimer’s.” Amy said that
now she could wear her new shoes even if they don’t match her dress. Her first dog, Chester, alerts her
when she is going to have seizures. She freely admitted that her cat doesn’t
care. Her husband, George, is her care partner and she loves him more than
ever. Amy is being considered for an appointment to next year’s Alzheimer’s
Association Board of Directors.
Lisa Genova, author of Still
Alice, received the Sargent and Eunice Shriver Profiles in Dignity Award. Lisa
was at the 2008 Alzheimer’s Forum speaking to an early stage group and selling
her self-published book. I bought a book from Lisa during that long-ago Forum
prepared to be disappointed. Boy, was I ever wrong! I was so impressed by Still Alice that when a student I was
mentoring wanted to know what Alzheimer's book to review, I recommended Still Alice. The book was later
published by Simon & Schuster and spent 40 weeks on the New York Times bestseller list and sold 2.1 million copies in 30 different languages. The movie,
starring Julianne Moore, has followed a circuitous route to become an acclaimed
movie co-produced by Elizabeth Gelfand
Stearns, chair of the Judy Fund, who read the book in one night.
On Wednesday, we stormed Capitol Hill. Jessie Kwatamdia,
Marcia Rauwerdink, and I along with other advocates visited Senator Blunt and
Claire McCaskill’s offices. We three then visited with Congresswoman Hartzler,
where we received a warm reception. After our visits, Jessie and I attended the
Senate Hearing on the Fight Against Alzheimer’s, Senator Susan Collins, chair,
and Claire McCaskill, ranking member. Missouri advocate Kim Stemley, a young caregiver for
her mother, gave a powerful, on-point testimony.
The influence of 1,100 dedicated advocates, wearing purple
sashes, each delivering the same message, punctuated with personal stories, leaves a lasting impression on
our legislators. Collectively, we
are influential, but we are unstoppable as individuals who advocate throughout
the year.
I am thankful to once again be part of this group and look forward to returning for my
sixteenth Advocacy Forum April 4 – 6, 2016, to make sure our voices are not
forgotten.
Copyright © March 2015 by L.S.
Fisher
http://earlyonset.blogspot
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