Virtual Advocacy Forum celebrates a year of accomplishments

In order to continue following health and safety protocols, the 2021 Alzheimer’s Impact Movement (AIM) Advocacy Forum, the nation’s premier Alzheimer’s disease advocacy event, was reimagined as a virtual gathering May 17-19. More than 2,300 dedicated advocates spent the first two days engaging in online meetings with members of Congress and networking with colleagues.

Advocates shared why they’re fighting to end Alzheimer’s, learned about AIM and Alzheimer’s Association public policy priorities, and heard from lawmakers about the progress we’re making in Washington and state capitals. Attendees had on-demand access to videos and other resources to help them deliver advocacy messages on state and federal levels.

The Forum concluded on May 19 with attendees hearing from Alzheimer's Association Celebrity Champions, a governor working to support caregivers, legislators supporting research, Association leadership, and standout advocates making a difference in the lives of everyone impacted by dementia.

Emcee Karyne Jones, a member of the Alzheimer's Association Board of Directors, began the proceedings by reminding advocates of how their relentless efforts, even in the midst of a pandemic, spurred impressive legislative accomplishments, including:

• Ensuring people living with younger-onset Alzheimer’s have access to critical care and support.
• Protecting people living with dementia from elder abuse.
• Securing an additional $300 million in National Institutes of Health research funding and $15 million to fund the BOLD Infrastructure for Alzheimer’s Act.
• Guaranteeing health care providers are aware of care planning available through Medicare for people with dementia.
• Growing support for key COVID-19 policy priorities at the federal and state levels.

“While we're unable to be together in Washington, D.C.,” Jones said, “tonight’s program is no less important, and your work over the last year has been no less impactful. Because of you, we will make meaningful change and improve the lives of everyone impacted by dementia.”

Advocates make a difference

Jones introduced Gov. Michelle Lujan Grisham (D-N.M.), calling her “a fierce champion of people impacted by dementia.” Lujan Grisham has signed into law legislation establishing protections for New Mexico’s seniors and supported numerous AIM and Association priorities during her time in the U.S. House of Representatives.

“[Alzheimer’s advocates] have made a huge difference in Congress and in state legislatures,” Lujan Grisham said. “I know what an impact your efforts have certainly made in my administration by sharing your personal stories and dedicating your advocacy efforts to making a difference for every single individual living with dementia and their caregivers and families.”

Alzheimer’s Association Celebrity Champions Richard Lui of MSNBC, Deborah Roberts of ABC and actor Kyle Bornheimer spoke about why they advocate for the cause. Bornheimer lost his father to complications from Alzheimer’s in 2017, and his family’s experience with the disease created “an intense drive” to fight for everyone impacted by Alzheimer’s and dementia.

“Thanks to your work, real progress is being made,” Bornheimer said. “It’s important to acknowledge that progress because progress is hope, and hope inspires us to keep going. Even though there is much to be done, we have to acknowledge all of you who continue to fight so tirelessly.”

Bipartisan humanitarians

Robert Egge, AIM executive director and Alzheimer’s Association chief public policy officer, presented the Alzheimer’s Impact Movement Humanitarian Award to Sen. Shelley Moore Capito (D-W.Va.) and Rep. Ted Deutch (R-Fla.). The award recognizes public officials who’ve made a significant policy contribution to advancements in research, care and support for people living with Alzheimer’s and or another dementia.

“Their efforts are an outstanding example of Republicans and Democrats coming together to address the Alzheimer’s crisis,” Egge said. “We’re all very grateful for that ongoing bipartisan support.”

Capito has spearheaded vital legislation such as the BOLD Infrastructure for Alzheimer's Act, the Improving HOPE for Alzheimer’s Act, the Younger-Onset Alzheimer's Disease Act, and the Promoting Alzheimer’s Awareness to Prevent Elder Abuse Act. She is also the lead Republican Senate sponsor of the new bipartisan Comprehensive Care for Alzheimer’s Act, a top AIM and Association legislative priority which seeks to create a better path to high-quality dementia care, streamline dementia care management, improve outcomes and reduce costs.

“I can’t stress enough how important your advocacy is to our goal of finding a cure for Alzheimer’s and dementia and improving the lives of those impacted,” said Capito, whose parents both lived with Alzheimer’s. “I encourage you to keep fighting the good fight.”

Deutch was the lead House sponsor of the Promoting Alzheimer's Awareness to Prevent Elder Abuse Act and was instrumental in ensuring its passage. He also cosponsored the Improving HOPE for Alzheimer's Act and the Younger Onset Alzheimer's Disease Act, and supported the BOLD Infrastructure for Alzheimer's Act and historic federal Alzheimer’s and dementia research funding increases.

“I’ll continue to support efforts to help Americans living with Alzheimer’s by supporting legislation to fund research, expand legal protections and support members of this community and all of their loved ones,” Deutch said. “I’m really grateful for this award, and I’m especially grateful for all of the work you do.”

Breaking down barriers

In 2016, National Early-Stage Advisor Member Maria Turner was diagnosed with frontotemporal dementia and ALS at the age of 48. Two years later, she was diagnosed with Alzheimer’s and probable CTE likely caused by a history of concussions. She said that initially she felt numb after receiving such devastating health news but recovered from her self-described “pity party” and began her journey as an Alzheimer’s advocate.

“If through all of these efforts I can walk alongside just one person and prevent them from going this alone, I’ll know that I’ve had a part in breaking down barriers and helping end the stigma that a dementia diagnosis brings,” Turner said. “Just one person can make a difference, but imagine the difference thousands of us can make. This is not an easy road, and it’s not for the fainthearted, but we who walk it must not give up.”

Joanne Pike, DrPH, Alzheimer’s Association chief strategy officer, reiterated the importance of the Comprehensive Care for Alzheimer’s Act. “We know that providing care for individuals living with dementia poses unique challenges,” she said. “This bill has tremendous potential to address shortcomings in the way dementia care is delivered. With your help, we have the opportunity to bring meaningful change to millions of Americans.”

Pike also introduced the 2021 Alzheimer’s Congressional Team of the Year, from Georgia’s 6th congressional district. The award is bestowed upon the team which best exemplifies what it means to be Alzheimer’s advocates. Alzheimer’s Association Ambassador Jamie Saunders and team members Dan Goerke, Cabot Wigger and Peggy Lavender were honored for building a strong relationship with Rep. Lucy McBath (D-Ga.), securing her cosponsorship on every AIM and Association legislative priority, including the Improving HOPE for Alzheimer’s Act and increased federal Alzheimer’s and dementia research funding.

“We’re super proud of the relationship we’re building with Rep. McBath’s office and her team,” Saunders said, “and we hope to continue to fight this fight together.”

Alzheimer’s Association Chief Science Officer Maria Carrillo, Ph.D. discussed the new bipartisan Equity in Neuroscience and Alzheimer’s Clinical Trials Act (the ENACT Act), which aims to increase clinical trial participation among underrepresented populations.

“We’ve made increasing the participation of underrepresented populations in clinical trials a priority in our research and engagement efforts,” Carrillo said. “This underrepresentation not only hinders the ability of researchers to understand health disparities, but it also restricts their knowledge of how an approved therapy or diagnostic may affect the populations most likely to need treatment.”

The younger generation

Carrillo also presented the Young Advocate of the Year Award, given to a member of the next generation of Alzheimer’s advocates who has dedicated him or herself to raising awareness of the disease among a younger audience. Honoree Rithvik Ganesh, a high school junior, was inspired to act due to multiple family members living with dementia. He has served as a state champion for Rep. Matt Shaheen (R-Texas) and an Alzheimer’s Congressional Team member for Rep. Van Taylor (R-Texas).

“Seeing [my family members’] struggles with the lack of meaningful treatments available made me understand the severity of the issue and the need for increased research funding,” Ganesh said. “With the work of advocates across the country, I can’t wait to see the day when Alzheimer’s becomes a thing of the past.”

Harry Johns, Alzheimer’s Association and AIM president and CEO, commended advocates for their relentless efforts in the fight against the disease.

“Thank you so much for what you have done during this pandemic and for what you have done over the course of time to advance our mission on behalf of our constituents,” Johns said. “We will continue to advocate until we realize our vison of a world without Alzheimer’s and all other dementia.”

The importance of the mission

Johns introduced a message from Sen. Debbie Stabenow (D-Mich.), a longtime champion of the cause and a supporter of many AIM and Association legislative initiatives.

“This mission has never been more important,” Stabenow said. “We know there’s so much more to be done, but with all of you and your continued advocacy, I know that we can get there together. We’re going to get there on a cure.”

Jones then presented the Advocate of the Year Award to Sherri Walker. The award honors an advocate who goes above and beyond in dedicating time, energy and effort to the fight to end Alzheimer’s and to supporting families facing the disease.

Walker, whose grandmother was diagnosed with Alzheimer’s in 2000, has been an Association volunteer for more than 11 years. Since 2014, she has been an Alzheimer’s Association Ambassador to Rep. John Rutherford (R-Fla.), securing his support for legislation such as the Alzheimer's Caregiver Support Act. She has also served as an Alzheimer’s Congressional Team member for Rep. Al Lawson (D-Fla.), and is a state champion for Sen. Audrey Gibson (D-Fla.).

“As a result of my grandmother’s having Alzheimer’s, I learned my purpose: to turn my pain into passion,” Walker said. “I’m able to share my personal story about my grandmother to help others.”

The evening concluded with Jones commending advocates for being so dedicated to creating positive change in the fight to end Alzheimer's.

“I hope you’ll carry the victories we’ve celebrated tonight and the stories you’ve heard with you as you continue your meetings with elected officials,” she said. “They are evidence of the progress that we can make together — that we have made together — on behalf of all those affected.”

To take action on these and other AIM and Alzheimer’s Association priorities, visit alzimpact.org.