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Give NowAlzheimer’s Association Celebrates 20 Years of Its Early-Stage Advisory Group
— Pioneering program has amplified the voices of people living with dementia, driving meaningful change across policy, care and public awareness —
CHICAGO, March 2, 2026 — The Alzheimer’s Association is marking the 20th anniversary of its National Early-Stage Advisory Group (ESAG), a pioneering program that elevates the voices of people living with early-stage dementia. Formed in 2006, the Early-Stage Advisory Group brings together individuals from across the country who share their lived experiences to help shape the Association’s programs, materials and national priorities.“Being part of ESAG has given me something I never expected after my diagnosis — a platform to make a difference,” said current advisor Aaron Daniels from Arlington, Virginia. “When you’re told you have dementia, it can feel like your voice is being taken away. This group reminds us that we still have purpose, influence and the ability to change what the future looks like for others.”
The group’s milestone anniversary was celebrated recently during the Alzheimer’s Association Community Leaders Summit 2026 in Anaheim, California. A video highlighting the group’s accomplishments was presented. Pat Krebs, a current advisor from Grove City, Ohio, addressed attendees and reflected on the group’s legacy.
“The Early-Stage Advisory Group was built on a powerful belief: that there should be nothing about us without us,” Krebs said. “Today, that belief is stronger than ever. People living with dementia are not only sharing stories, we are serving as advisors, as national spokespersons, and as contributors to research, advocacy, education and anti‑stigma efforts. This evolution ensures that lived experience doesn’t just inform the work, it helps lead it.”
Since its launch, the Early-Stage Advisory Group has played a pivotal role in advancing policies and initiatives that support those living with dementia. Advisors helped secure the inclusion of younger‑onset Alzheimer’s in the Social Security Administration’s Compassionate Allowance Initiative, giving eligible individuals faster access to disability benefits. They also contributed to grassroots efforts that led to the National Alzheimer’s Project Act (NAPA), the nation’s first plan to address Alzheimer’s, and helped advocate for Medicare coverage of FDA‑approved Alzheimer’s treatments.
“The Early-Stage Advisory Group has transformed how we develop programs, craft resources and shape public policy,” said Elizabeth Edgerly, Ph.D., senior director of Community Programs and Services at the Alzheimer’s Association. “For 20 years, these advisors have ensured that the perspectives of people living with dementia are not just heard, but centered. Their leadership has driven meaningful change for millions of families facing this disease.”
Nearly 200 individuals living with early-stage dementia have lent their voices to the group, helping the Alzheimer's Association strengthen the support families receive from the moment of diagnosis throughout the care journey. Advisors have shaped major disease-education initiatives, including the Live Well online series and the recently launched My ALZ Journey® app — resources designed to offer immediate, easy‑to‑use support for people living with early-stage dementia and the families who walk alongside them. Their lived experience has informed national medication recommendations and guided the development of ALZNavigator™, a tool that helps families plan, prepare and make informed care decisions. The Early-Stage Advisory Group has also strengthened the research experience through the Alzheimer's Association TrialMatch® by helping researchers better connect with people and families considering clinical trials.
Advisors have shared their experiences with local and national media outlets, including The Washington Post, The Wall Street Journal, The New York Times, CBS Sunday Morning and NBC Nightly News, generating more than 300 million media impressions since the group’s inception. They have also advised actors, writers and producers working to accurately portray dementia in film, television, theater and literature.
Many advisors have been featured speakers at Association galas and remain active in Association fundraising events, including Walk to End Alzheimer’s® and Do What You Love to End ALZ™.
“The Early-Stage Advisory Group has profoundly changed us as an organization,” said Joanne Pike, DrPH, president and CEO of the Alzheimer’s Association. “Each advisor reminds us that behind every statistic is a person fighting to hold on to their memories, their relationships, their identity. For 20 years, their courage and honesty have guided us, pushed us and inspired us. Their voices don’t just shape our work; they give it meaning.”
As the Early-Stage Advisory Group marks two decades of leadership and impact, the Alzheimer’s Association remains committed to a future in which every person living with dementia is heard, valued and supported — and where their voices help lead the way toward earlier diagnoses, better care and, ultimately, effective treatments and prevention.
About the Alzheimer's Association
The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia®. Visit alz.org or call 800.272.3900.