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Celebrating Alzheimer’s Advocates: 2022 Award Winners Share Their Stories

Celebrating Alzheimer’s Advocates: 2022 Award Winners Share Their Stories
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May 18, 2022
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During the 2022 Alzheimer's Impact Movement (AIM) Advocacy Forum, volunteer advocates from across the nation are turning Capitol Hill purple, imploring policymakers to advance policies to improve the lives of those affected by Alzheimer’s and other dementia. Here are the stories from this year’s outstanding winners of the Young Advocate, Alzheimer’s Congressional Team (ACT) and Advocate of the Year awards. 

And the award goes to…

Evan Haynes-Kepper, Ambassador to Indiana’s 8th Congressional District, 2022 AIM Young Advocate of the Year!

Year round, Evan Haynes-Kepper uses his voice in tribute to the two grandparents he lost to Alzheimer’s disease. Seeing the impact of Alzheimer’s on his family changed Evan forever. “With a diagnosis, everything changes. I saw what Alzheimer’s is and how destructive it can be, and the trauma it leaves behind.” Shortly after losing his grandfather, who was his role model, Evan reached out to the Southwest Indiana Chapter of the Alzheimer's Association to get involved. “I didn't know how to process the pain, and I wanted to start helping other families like mine,” he said.

Evan has gone above and beyond in his role as an Alzheimer’s Ambassador, a testament to his dedication to the cause. “I’m committed as the main point of in-district contact, meeting with legislators to help pass crucial legislation for Alzheimer’s funding and research,” Evan shares. In his year round advocacy efforts, Evan has spoken on advocacy panels, presented in his community and created recruitment tools and social media videos to further spread awareness and education around the disease. 

As Ambassador to Congressman Larry Bucshon, M.D. (IN-08), Evan has worked to inform the Congressman and his staff about legislation that will provide better care for families facing Alzheimer’s and other dementia and more funding for research. “I push for policies and help change laws so we can help everyone affected by Alzheimer’s today, and tomorrow,” he said. People with dementia are at a higher risk for elder abuse, and this reality is another issue that Evan is working to change through his advocacy. “Being a part of creating positive change is incredible. Speak today, while you can, for those who can’t.”

Today, Evan says his ‘biggest mission’ is that of the Alzheimer’s Association. His dedication extends to the Southwest Indiana Walk to End Alzheimer’s in Evansville, for which he has served as event chair. “I spend almost all of my free time to better my outreach in my community to spread Alzheimer’s awareness. Everyone who volunteers has an impact! Without our personal stories, we cannot continue our mission. Join us, and wear your purple with passion.”

A huge congratulations to…

Michele Castro of the Delaware Valley Chapter, the 2022 AIM Advocate of the Year!

Remarkable. Committed. Empowering. Those who know her well use powerful words to describe Michele Castro, saying she has flourished in the role of advocate, becoming a leader as an Alzheimer’s Ambassador
The AIM Advocate of the Year award is given to the top advocate in the country based on their engagement with their members of Congress and their dedication to the cause. An advocate since 2015, Michele fights for the beloved family she has lost: her mother, brother, and two aunts, all to younger onset Alzheimer’s.

Michele inherited the PSEN1 genetic mutation that took the lives of her mother, Rose, and her brother, Joe, both before the age of 60. Michele was determined to keep the promise she made to Joe by becoming an Alzheimer’s Association advocate. “Each loss in my life has made me stronger to advocate for those who cannot,” Michele said. “As advocates, we must champion inclusion in clinical trials for Black Americans, Latinos, Asians and Native Americans.”

Michele has tirelessly promoted advocacy through her career, social media, Alzheimer’s education programs and her local Walk to End Alzheimer’s. Building relationships to encourage collective action, Michele leads her Alzheimer's Congressional Team, which includes fellow advocates Pam, Anastasia and Hollie Marie, with compassion.

Whether engaging with the media or sharing her unique personal story to move others to action, Michele uses her voice to make a difference. As Ambassador to Congresswoman Susan Wild (PA-07), she has worked to gain support for policy priorities, including the ENACT Act, the Comprehensive Care for Alzheimer’s Act and the Alzheimer's Caregiver Support Act

We are thankful to Michele for channeling her personal experiences to create change, growing exponentially into her role as an advocate leader. She is proud to accept the Advocate of the Year award. “I’m dedicated to changing the trajectory of Alzheimer's for future generations,” Michele said. “I want to thank my husband, Carmelo, my biggest cheerleader. Thank you for always being by my side and making me feel like the most important person in this world. I love you!”

We congratulate…

Jeanne Delaney, Dana Davis-Ross, Genice Ferrell and Brittany Gates, members of IL-01, the 2022 ACT Team of the Year!

Alzheimer’s Congressional Teams (ACTs) are groups of volunteers committed to helping raise their elected officials’ awareness of and support for public policy related to Alzheimer’s disease.

Throughout the pandemic, IL-01 team members Jeanne, Dana, Genice and Brittany connected virtually with each other and their representatives; as in-person events opened back up, they were diligent in their presence at community events. The team represents their communities by sharing the realities of the toll of dementia, particularly the effects on Black Americans and women. Through the many hurdles of the past few years, these passionate advocates have been resilient and creative, increasing their engagement efforts at every turn.

As an advocate, and as a staff member of the Alzheimer’s Association 24/7 Helpline, team lead Jeanne Delaney fights to end Alzheimer’s on behalf of her Aunt Barb, diagnosed with Alzheimer’s six years ago, who she helps care for. “I’ve watched this vivacious person I love go from planning elaborate family events to being unable to locate a room in the house she has lived in for 35 years,” Jeanne says. “I advocate for her, and all families who experience this disease so that one day, no one will ever have to again.” Jeanne’s fellow team members Dana, Genice and Brittany have all lost a loved one to the disease.

As the team has engaged with their representatives, they have learned the benefits of advocating for a cause close to their hearts. “You get a great feeling of adrenaline and overall goodness after sharing your story with your representative on Capitol Hill,” Jeanne said. “Our representatives now know more about this disease because of our advocacy efforts, and that is why we must continue.” Jeanne, Dana and Genice further their inspired volunteer involvement through the Walk to End Alzheimer’s, and Brittany is a member of the Illinois Junior Board.

Whether the team is recording social media videos they share with representatives or writing letters to the editor of their local newspapers about their personal story, they are always bringing awareness to the cause. Jeanne says this type of storytelling has been the most impactful. “When we share what this disease has done to us, how it has affected our loved ones, it changes the trajectory of a conversation. Our representatives notice when people step up, and by speaking out, we can create change. Your story makes a difference to the people who sign bills and push decisions forward.”

Every person on the team has contributed to building relationships with their state representatives, furthering the camaraderie of their team and their efforts for the people of their district. “After joining this team, I feel very heard,” Jeanne says. “Every day, my kids will ask: ‘Did you cure Alzheimer’s today?’ I tell them ‘Not today…’ but I know we will, together.” 
Congratulations to our 2022 award winners and THANK YOU to all who make a difference in the fight to end Alzheimer’s.

Learn how you can become an Alzheimer’s Association advocate and about the Alzheimer's Ambassador Program.

Not sure how you want to volunteer? Learn more about other volunteer opportunities with the Alzheimer’s Association.

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