Advocates return from the Annual Advocacy Forum inspired and ready to fight

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Last Wednesday, more than 1,300 Alzheimer’s advocates from across the country, and 21 advocates from Southeast Florida, descended on Capitol Hill in a sea of purple. This moment marked the finale to an inspiring and motivating Advocacy Forum in Washington, D.C.

The three-day event is held annually in the nation’s capital. Advocates from across the country flock to D.C. to share their stories; learn from each other; and fight for legislation to support those with Alzheimer’s and ultimately find a cure.

Doris Sanders on stage, representing Florida at the Annual Advocacy Forum.
Doris Sanders on stage, representing Florida at the Annual Advocacy Forum.

The Forum kicked off with the roll call of states in which a representative from each state provides an update on the past year’s legislative victories. Florida was proudly represented by Southeast Florida advocate, Doris Sanders, who discussed the attendance of our state advocacy day in February and the success we’ve seen securing additional funding for respite services and research funding within the state.

“It was an honor to represent Florida in the roll call and to share what we have accomplished,” said Doris Sanders. “This year’s Forum was exciting and inspirational, and as someone who has attended this event for several years, to see the growth and increased awareness was incredible.”

LGBT Alzheimer's Advocates at Annual Advocacy Forum.
Southeast Florida advocates Gordon Broom and Larry Jordan presenting at the Annual Advocacy Forum.

The next day, advocates heard from caregivers, individuals living with Alzheimer’s and Alzheimer’s champions about the need to continue the fight. Our advocates Gordon Broom and Larry Jordan took the stage Tuesday morning to share their story.

Gordon was diagnosed with early onset Alzheimer’s in 2007 and, as he said in his remarks, “he would not suffer in silence”. He has been an outspoken advocate ever since. Gordon and Larry also spoke of the outreach they have been able to do in the LGBT community. Their remarks and devotion to each other drew a standing ovation from the crowd. Many caregivers came up to them thanking them for sharing their story, as they too were a part of the LGBT community and resonated with their journey.

Throughout the day, the advocates participated in advocacy trainings to learn more about our two legislative priorities: an additional $414 million in funding for Alzheimer’s research, and support for the Palliative Care Hospice Education and Training Act (PCHETA). The advocates were briefed on the costs of Alzheimer’s and the stark divide in the amount spent on research as compared to Alzheimer’s care (for every $100 spent by the NIH on research, Medicare/Medicaid spends $16,000 on care). For more Alzheimer’s facts and statistics, please visit the 2017 Facts and Figures.

The advocates were also educated on PCHETA. This legislation aims to increase palliative care and hospice training for health care professionals; launch a national campaign to inform patients and families about the benefits of palliative care; and enhance research on improving delivery of palliative care. There is a lot of misinformation regarding palliative care, making this legislation crucial. Nearly half of all people with Alzheimer’s are in hospice care at the time of their deaths.

One of our Southeast Florida advocates, Dr. Hilary Glazer from Memorial Hospital, was able to shed light on palliative care for the group and reinforce why this legislation is so important for those living with Alzheimer’s. As Dr. Glazer said when addressing the group, “Palliative care identifies the individual goal of the individual and family- for example, whether they wish to stay at home”.

The day ended with the National Alzheimer’s Dinner, emceed by actor and Alzheimer’s champion Peter Gallagher. Awards were given to Alzheimer’s champions such as Rep. Tom Cole (OK) and Rep. Nita Lowey (NY).

Journalist Maria Shriver speaking at the Annual Advocacy Forum.
Journalist Maria Shriver speaking at the Annual Advocacy Forum.

The highlight of the evening was when Maria Shriver was honored with a Lifetime Achievement Award for her endless advocacy and persistence in finding a cure. Maria has been outspoken advocate ever since her father was diagnosed with Alzheimer’s. As a journalist, she has turned her tenacity into a lifelong passion to find a cure. She founded the Women’s Alzheimer’s Movement after discovering Alzheimer’s disproportionately affects women. Maria left the crowd inspired and ready to take our fight to Capitol Hill the next morning.

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Advocates at day 3 of the Annual Advocacy Forum.

The final day of Forum was Hill Day. The hotel lobby was wall-to-wall purple as advocates came together to don purple sashes. Buses filled with advocates ready to make a difference. We embarked on our mission to share the cost of Alzheimer’s with our elected officials, ensure they make it a priority, and share our personal stories with them.

Advocates from throughout the state of Florida packed Sens. Nelson and Rubio’s offices. Both senators are on the Select Committee on Aging, and we discussed the reality of Alzheimer’s in Florida with them, including that Florida has the second highest incidence rate in the country.

Advocates spent all day meeting with legislators and their staff sharing their stories and helping move the needle on the progress that must be made.

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(Clockwise from top left): Advocates with Rep. Frederica Wilson; Rep. Ileana Ros-Lehtinen; Rep. Mario Diaz Balart; and Rep. Brian Mast.

It was a remarkable to see no matter where you turned in the Capitol complex, there was someone in purple.  That gives me hope that we are increasing awareness and getting closer to finding a cure.

Now, we wait to see if our Congressional delegation will support our requests.  Even though we had positive meetings, our work has just begun. We cannot get complacent; we must continue this fight, and we cannot do that without your help. If you are interested in getting involved with our advocacy efforts, please contact Jennifer Braisted, jbraisted@alz.org.

The Southeast Florida chapter had 21 advocates in attendance, ranging in age from early 20s to early 80s. Some were former caregivers, including Leslie Rivera and Doris Sanders, who are continuing the fight to end Alzheimer’s even after losing their loved ones to the disease. Several current caregivers, including Cherise Fletcher, Marta Junco Ivern and Valerie Detweiler, attended in honor of their loved ones living with the disease.

Other advocates included those living with Alzheimer’s disease. Gordon Broom, a younger-onset advocate who has been living with the disease since 2007, courageously shared his personal story and his family experience with this disease at Forum.

Finally, many advocates work in the field and see the devastation the disease causes first hand. Amy Adaniel, Cristina Rodriguez and Crystal Collier attended Forum to show their support and work for a world without Alzheimer’s.

We want to thank all of our advocates for making the journey with us to Washington, D.C. last week. We cannot make a difference in the fight against Alzheimer’s without you!

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