Last month, I had the privilege of attending the 27th Annual Alzheimer’s Association Advocacy Forum in Washington, D.C., the first of what I hope to be many of these events. My mind is still spinning from the knowledge that was gained, the connections that were made and just the general feeling that as caregivers we are not alone in this fight. More than 1000 advocates from across the country gathered to learn more about Alzheimer’s disease and to be trained on the most effective way to share our story with our representatives.
This is the first of a two-part recap post of my experience.
My trip got off to a bumpy start with a Stevie Wonder concert the night before (Can you say Mighty Life List?!), a 1 a.m. bedtime, a car window that would not go up on my ride to the airport (that miraculously started working 5 minutes later) and a 6 a.m. missed flight. However, I eventually made my way to the airport and arrived in D.C. with enough time to drop my bags at my friend’s house, take a breather and make my way to the host hotel for a radio interview and the Welcome and General Session.
My first stop was a radio interview where I had an opportunity to share my caregiver story and why I, along with 1000 other advocates, was in D.C. for the Forum. I spoke on the disparity in funding for Alzheimer’s, the importance of awareness and the top public policy priorities for the year. The interview will be shared with local radio stations through an awareness campaign by the Alzheimer’s Association national office.
After my interview I made it back to the ballroom to catch the welcome remarks, brought by Verna Jones-Rodwell, former Senator from Maryland and the 2015 chair of the Alzheimer’s Association Advocacy Forum.
The Welcome Session featured a roll call of the states, where a representative from each state was given 30 seconds to share the accomplishments their state had made over the year and something special about their state. All 50 states were represented, and surprisingly it went fairly quickly. It was impressive to hear all the work and stories of success from around the country.
I was really impressed by the level of diversity throughout the weekend’s events. Women and people of color were consistently on stage at every event and on the front lines representing the Association.
One of the highlights of the evening was the Young Advocates Training and Networking Program. It was refreshing to see so many other young people passionate about this cause and to hear their stories. While I know they exist, I rarely (if ever) see young advocates and caregivers. Many were much younger than I. I am a firm believer that the end of this disease will come from this young, brilliant and energetic generation with the passion and follow-thru to effect change. Senior Advocacy Specialist Aline Stone, Caucus Field Director Emily Holley and New Hampshire Campaign Coordinator Marissa Chase shared how we could use our advocacy efforts for the upcoming 2016 Presidential Campaign by attending town hall meetings and community events when candidates make local visits. We should speak out in those meetings and ask questions about what work the candidates plan to do around this epidemic that is greatly effecting their constituents. Sounds like a simple enough task.
This was also where I met what would come to be known as “the coalition,” a group of young ladies from across the country who I spoke with throughout the evening and ended up hanging with for the rest of the weekend. We shared our stories and bonded over our shared passion for advocacy and awareness.
Tuesday kicked off with a keynote presentation from the 16th U.S. Surgeon General and current director of the Satcher Health Leadership Institute at the Morehouse School of Medicine, Dr. David Satcher. Dr. Satcher has taken care of his wife who is living with Alzheimer’s for the last 15 years and shared his personal connection to the disease. Learning more about his beginnings as a child growing up in Alabama, his journey as a caregiver and his passion for increased research and care for patients increased my level of respect for a man who I honestly did not know much about. His presentation was informative and inspired us to be leaders in this movement.
My key takeaway from Dr. Satcher’s presentation:
What will it take to eliminate disparities in health?
- We must care enough
- We must know enough
- We must be willing to do enough
- We must persist in our efforts.
In the next session we heard from Dr. Richard J. Hodes, Director of the National Institute on Aging (NIA), one of the 27 institutes and centers of the National Institutes of Health. The NIA is the primary Federal agency supporting and conducting Alzheimer’s disease research. That said, this guy is super intelligent and has a personal connection to the disease, as his mother was diagnosed with Alzheimer’s in her 80s. He provided promising updates on research and recent medical advances. He is the “commander in general” in the fight against Alzheimer’s and from what I heard from him throughout the weekend we are in capable hands.
The rest of the day was spent attending training sessions on our legislative requests and how we should approach the conversation with our Congressmen on Wednesday . The Alzheimer’s Association did an excellent idea of crafting a clear and concise message and providing clear handouts outlining our major points. Not only were we prepared to speak to Congress, we are also now prepared to come back to our hometowns and share what we learned with others and speak knowledgeably about our advocacy efforts, the statistics and how others can help.
3 Key Points
1. Alzheimer’s is the most expensive disease in America.
The total cost of care for those with Alzheimer’s is estimated at $226 billion in 2015. That number will skyrocket to $1.1 trillion in 2050 if something is not done.
2. Alzheimer’s is over-taxing state and federal budgets.
Of the $226 billion spent on Alzheimer’s care, more than two-thirds or $153 billion is paid by Medicare or Medicaid, while $586 million is spent by the NIH on research to find treatment.
3. Alzheimer’s is devastating to patients and their loved ones.
It is the 6th leading cause of death in the United States. Of the top 20 killers, Alzheimer’s is the only one that cannot be prevented, cured or even slowed.
Top Public Policy Priorities
- $300 million increase in funding for research to the National Institutes of Health in fiscal year 2016.
- Support for the Health, Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act, which will ensure that Medicare beneficiaries newly diagnosed with Alzheimer’s disease and their families receive comprehensive care planning services.
The high point of the trip might have very well been the National Alzheimer’s Dinner. If you had told me two years ago beginning this journey that I would be at the National Alzheimer’s Dinner in Washington, D.C. with the leaders of this movement and 1000 of my fellow advocates, I likely would not have seen it. As I was sitting there, I thought to myself, “This is pretty major!”
The event was hosted by CNN’s lead political anchor, Wolf Blitzer, a long-time Alzheimer’s advocate. A number of awards were given out throughout the evening. Lisa Genova, author of “Still Alice” was presented with the Sargent & Eunice Shriver Award for promoting a greater understanding of Alzheimer’s disease through her work, for which Julianne Moore won an Oscar. Dr. Richard Hodes, Director of the NIA, received the Ronald and Nancy Reagan Research Award. The award honors researchers who have contributed outstanding research in the field of Alzheimer’s.
After several failed attempts, my fellow coalition members and I finally snagged a photo with the beautiful B. Smith. B. Smith is an entrepreneur, restaurateur, and fashion icon who is living with early onset Alzheimer’s. She is just as beautiful and elegant as I had imagined her to be. I briefly shared my story with her and appreciated her genuine concern for my family. I also had an opportunity to speak with her husband Dan Gatsby, another strong advocate in this fight. He was very down to earth and equally as passionate about using their platform to increase visibility of this disease, especially in the African-American community.
The Association posted tweets and pictures from the evening on the huge screens at the front of the ballroom throughout the night and my fellow “coalition” members and I were featured. Look ma, I’m famous! The tweet reads, “Texas, New York and Illinois representing in the fight to #endalz. #alzforum #newfriends #advocates.”
Day 1 and Day 2 were jammed packed, but I learned so much and received so much inspiration from the speakers and my fellow caregivers, that I was fired up and ready to go for Hill Day!
Read Part 2 here.