Our Impact

As the only nonprofit community specifically for families facing familial Alzheimer's disease (FAD), we fill a much-needed role.

We provide a range of tangible support for the FAD community, including:

• 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 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.

“I [finally feel like] I’ve found a place where I don’t have to explain what it feels like to be in my situation. The complexities of it all are understood. For months, before joining the group, I would feel like no one understood. I’d have to explain and frame things for (everyone)... one neurologist was in denial and sent me home with a title of a book to read... my point is, having (this) group (of people who are) actually in our shoes, is invaluable.”

Youngtimers Community Member

“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.”

Youngtimers Community Member

"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."

Youngtimers Community Member

“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.”
~ Youngtimers Community Member

“Thank you so much for being a home when I felt like I was very alone.”

Youngtimers Community Member

“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.”

Youngtimers Community Member

“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.”

Youngtimers Community Member

“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!”

Youngtimers Community Member

“I have to let you know how valuable your experience is to me and how it helps me feel that I am not alone in this. As I read and re-read your email I felt how brave you are. How brave we all have to be and I was reminded that I want to be brave like you. 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.”

Community member in response to connecting to Youngtimers volunteer

“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?”

Youngtimers Community Member

“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.”

Youngtimers Community Member