We support people impacted by familial Alzheimer’s disease with community, education and advocacy. |
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Hi there, There's something powerful about being in the same room with people who understand the journey you're on without you having to explain it. No matter where it takes place, in-person connection has a way of reminding us that we're not navigating anything alone. That's one of the many reasons I'm so excited to be heading to London next month for family conference!
The DIAD Family Conference in London is just weeks away, and we couldn't be more excited to gather with so many of you.There are still spots for Youngtimers events, but they're filling up quickly.
And if you missed our recent conversation about Mike Zuendel’s promising journey with anti-amyloid therapy, the recording is now available and definitely worth watching.
This community continues to inspire me every day. From science breakthroughs to people running marathons with a fridge strapped to their back, to advocates bravely standing up to tell their story, to a fellow community member dreaming up a new way for us to gather in person - you'll find all of it in this month's newsletter, and I hope it leaves you as inspired as it leaves me. |
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Friday - Sunday, July 10-12 | Bloomsbury, London The DIAD Family Conference is just around the corner, and we are so excited to see everyone. Our team has organized a series of wraparound events in London designed to connect, celebrate, and support our community in meaningful ways. If you'll be joining us, we hope you'll make time for these special gatherings. Follow the link below to learn more and register. |
Designing the Life You Want: For Those Who Have Been Shaped by FAD |
An in-person retreat | San Francisco Bay Area | January 5–7, 2027
We're excited to share that Youngtimers co-founder Alicia is organizing something special in the San Francisco Bay Area.
Alicia is personally organizing this gathering as a space for community members to pause, reflect, and connect with others who truly understand this journey. Accommodations and workshop programming will be provided.
This is a local initiative, and we're so proud to have a YT founder supporting this important work in the community. To learn more, email fadretreat@gmail.com. |
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Do you have workshop ideas? |
The response we received from our conversation with Mike Zuendel was so valuable and is inspiring us to think about what’s next. What topics would you want to see in a future workshop?
Email Courtney at courtney@youngtimers.org with ideas - I’d love to hear from you!
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Caregivers (All Stages): Sat, Jun 20 at 12pm CT (US) At-Risk/Asymptomatic: Sun, Jun 21 at 2pm CT (US) Symptomatic: Wed, Jun 24 at 4:30pm CT (US) Caregivers (Early Stage): Tue, Jun 16 at 7pm CT (US) |
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For more options, visit our support group page. It includes support groups from other organizations, such as a Spanish-speaking support group and groups for teens and young adults. |
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Calling all video watchers! |
Like watching videos? We were fortunate to have a wonderful intern who has helped with 40 hours of video editing services this summer (Thanks Marin!) Now, we need more volunteers to help watch and review the edited videos before we publish.
Sound like you? To raise your hand to be added to our list of volunteer video reviewers, reach out to Erin at erin@youngtimers.org. |
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Biogen reports their investigational tau-lowering drug, diranersen, successfully slowed cognitive decline in early Alzheimer’s, offering hopeful news for FAD families since tau spread closely tracks with symptom onset. Although the trial missed a specific statistical goal, the overall positive data will be presented at the AAIC conference in July 2026. (Biogen) |
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The DIAN Primary Prevention trial will test if treating mutation carriers 11 to 25 years before expected symptom onset with the antibody remternetug can stop early amyloid buildup. Crucially, after a two-year placebo phase, the trial transitions into a four-year open-label extension where all participants will receive the active treatment. (npj Dementia) |
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Researchers identified variants near three genes—CCNG1, RHOJ, and CNIH4—that may influence how Alzheimer’s develops in people carrying disease-causing APP, PSEN1, or PSEN2 mutations. One CCNG1 variant was associated with dementia beginning approximately ten years earlier, but the findings came from very small numbers of carriers and require replication before they can guide individual risk predictions. (The Lancet)
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New FDA-Approved Treatment for Alzheimer's Agitation |
Axsome Therapeutics' AUVELITY (dextromethorphan/bupropion) just received FDA approval for agitation in Alzheimer's dementia. This is a meaningful step forward for the broader Alzheimer's community. While this approval is specific to late-onset AD, advances like this reflect growing momentum in Alzheimer's research that benefits everyone working toward better treatments. |
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ARTICLE
These two young men, carrying the same hereditary gene that took their mother, are channeling their grief into something extraordinary. Meet the Fridge-Carrying Brothers |
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| VIDEO
Richard Jamieson courageously shared his story recently with the goal of tackling the many misconceptions about Alzheimer's, hoping it will help others battling this disease who are so badly misunderstood. Listen to Richard's story |
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Alzheimer's Research Opportunities |
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Dr. Suzee Lee at UCSF is interested in understanding brain development in children from families with a history of Alzheimer’s disease. If you’re interested, contact the study coordinator at familyNDstudy@ucsf.edu. |
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The Dominantly Inherited Alzheimer Network (DIAN) is currently recruiting people who carry or may carry an FAD mutation to better study the disease and brain changes over time. If you’re interested, contact dianexr@wustl.edu. |
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The DIAN-Trials Unit (DIAN-TU) is now enrolling participants who are -25 to -11 years from their predicted age of Alzheimer's cognitive symptom onset to test a study drug (remternetug) for effectiveness in delaying or preventing Alzheimer disease. If you’re interested, contact dianexr@wustl.edu. |
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“It’s truly wonderful how much support Youngtimers offers.” |
-Youngtimers Support Group Attendee |
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