Our Impact
“Youngtimers has filled a critical gap between research and advocacy for the dominantly inherited Alzheimer disease community.”
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As the only nonprofit community specifically for families facing familial Alzheimer's disease (FAD), we provide a range of tangible support for the FAD community.
Cofounders Marty and Lindsay, working the Youngtimers booth at the 2025 DIAD Family Conference in Toronto.
Advocating for the needs of FAD families in Alzheimer’s research.
Virtual support groups (4 total per month) for people at-risk of developing FAD, people living with symptoms of FAD, and caregivers.
Peer matching program, which connects members of the community for peer support
Monthly newsletter with over 400 subscribers, including patient families, researchers, pharmaceutical representatives, medical professionals.
Virtual workshops featuring experts on topics relevant to the community, such as Dr. Rudy Tanzi (Lifestyle Interventions); Dr. Subhojit Roy, (Genetic Editing); Dr. Suzy Lee (Ins and Outs of FAD Panel); Dr. Cynthia Wilcox (Managing Grief); Dr. Bonnie Hennig-Trestman, (How to Talk to Kids about FAD)
The Youngtimers Forum, an online forum dedicated solely to FAD community
This website, which features
Guides on topics like genetic testing, fertility testing, mental health guides to support FAD journey
Ask the expert videos series and articles with experts like Randall Bateman (Director of DIAN Trials Unit); Laxmi Kondapalli (Fertility Specialist), Jill Goldman (Genetic Counselor)
Community stories
FAD 101
Research updates
Spanish translations
In-person community events, like receptions at Dominantly Inherited Alzheimer’s Disease (DIAD) Family Conference
Partnerships with organizations like the Rare Dementia UK, Rare Dementia Canada, Hilarity for Charity, and Lorenzo’s House, and the Dominantly Inherited Alz Network at Wash U
Answering questions for FAD families.
What members say
Feedback from the community makes it clear that we’re making an impact. Here’s what they tell us.
“Thank you so much for being a home when I felt like I was very alone”
“I am forever grateful to this special organization. It provided me community and hope, and it enabled me to plan, both for the practical and the emotional. I no longer felt lost and alone in confronting this disease. Thank you Youngtimers!”
“This group is unique with everyone having an opportunity to talk. No pressure and flat out honesty. Feels sad, special and hopeful. I learn something new each meeting.”
“I’m so glad to be a part of a community. I’m so lucky to have others to learn from. I’m so grateful for all you do to create support and community. It makes all the difference to me.”
"The Youngtimers group has offered me an invaluable resource for connecting with people who understand the unique personal and family challenges I'm experiencing as a result of this disease. Despite the difficult circumstances that bring us together, I leave every session feeling inspired, renewed and more resilient.”
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“Attending our support group is paramount and part of our monthly planning. We reserve the time and day in advance and look forward to sharing with our virtual friends not only our trials but our laughs and joys. The sense of community, belonging, understanding and empathy is incomparable.”
“I really appreciate all of your time and effort that you put into making these types of discussions happen. It is really important and it makes a difference to me.”
“My husband had the PSEN1 gene. My daughter attended the DIAN conference in San Diego last year. She felt that Youngtimers supported her through a difficult time. My husband passed away and at his memorial, donations were made to Youngtimers... Again thank you for the support my daughter received.”
“I have been in the DIAN trial for 8 years and I don’t know my gene status. Youngtimers has provided me a new connection to community that understands my challenges and puts a face to the faceless. What I love about Youngtimers is that they focus on the 1% — 100% of the time. They provide new information when I need hope, joy when I feel like a study object, and critical resources to make the best decision for my family. Other than a cure, what more could you ask for?”
“The leadership of Youngtimers is so impressive. I first met Lindsay at a DIAN conference around 10 years ago. And her stamina to recruit partners that would serve the needs of our community is remarkable. The Youngtimers support groups are actively serving the needs of a variety of people including caregivers, asymptomatic, and symptomatic folks. Seeing the YT leadership gather everyone at this past conference really filled me with joy and celebration.”
What Alzheimer’s researchers say
Because we work directly with FAD families, we can connect them to relevant research opportunities and share valuable feedback with Alzheimer’s researchers to help improve study design and participation.
Our gatherings also create space for families to exchange stories about their experiences in Alzheimer’s research — a demanding journey that few truly understand.
'Youngtimers has filled a critical gap between research and advocacy for the dominantly inherited Alzheimer disease community. The creation of this network by those impacted by the disease not only touches on issues most important to them, but helps to bring these items to the researchers working with them - advancing Alzheimer’s disease research in a truly unique way.’
Dr. Eric McDade
Professor of Neurology and Principal Investigator at DIAN Expanded Registry
Washington University. St. Louis
“I have always appreciated the incredible support and connections that Youngtimers provides for dominantly inherited Alzheimer’s disease families. Youngtimers has made substantial impacts with opportunities to communicate with the research community, the DIAN family meetings, and bringing a central voice from families to stakeholders with the common goal to end Alzheimer’s. Youngtimers is making a difference – keep going!”
Dr. Randall Bateman
Professor of Neurology, Director at Dominantly Inherited Alzheimer Network (DIAN)
Washington University. St. Louis
“Youngtimers is the only organization that truly brings affected families into the research conversation—not as subjects, but as partners. They give families with FAD a voice, which is critical to drive future progress and accelerate research.”
Dr. Kenneth Kosik
Professor of Neuroscience Research and Co-Director of the Neuroscience Research Institute at
UC, Santa Barbara
“The DIAN Expanded Registry (EXR) enjoys a strong partnership with Youngtimers and routinely refers registrants for much-needed support and practical information on living with familial Alzheimer’s disease. The virtual support groups, community-building webinars and peer support activities offered by Youngtimers complement the scientific research efforts of the DIAN network by bolstering families and fostering their continued participation in research. The DIAN EXR greatly values Youngtimers and its mission!”
Ellen Ziegemeier
Research Assistant
Washington University. St. Louis
"As a long-time contributor to the young onset dementias field, it is clear that Youngtimers fills a critical role for families affected by dominant Alzheimer's disease. Families that become impacted by these diseases are usually walking a new, unfamiliar, and treacherous road alone. Youngtimers pairs them with guides and peers to help them along their path. The journey is still hard, but this organization provides welcome relief in the form of the community that it provides."
J. Nicholas (Nick) Cochran, Ph.D.
Faculty Investigator, HudsonAlpha Institute for Biotechnology
Adjunct Assistant Professor, UAH Dept of Biological Sciences and UAB Depts of Genetics and Neurology