Catching up from AAIC 2026 |
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We support people impacted by familial Alzheimer’s disease with community, education and advocacy. |
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Hi there,
There's something hard to describe about spending time with people who just get it. No explaining, no bracing for the wrong reaction, just instant understanding. Last month at the DIAD Family Conference, I reconnected with old friends and met a lot of families who are just starting this journey.
The weekend was a swirl of science that gave me real reasons for hope, plus personal stories that wrecked me in the best way. I left grateful, tired, and with a full heart. Following the Family Conference, the Alzheimer’s Association hosted the largest annual Alzheimer's research meeting in the world (AAIC) with over 13,000 researchers and clinicians in attendance.
The weeks after AAIC are always full of news about progress in Alzheimer's research, but the reports can be hard to understand, and even harder to recognize what applies specifically to FAD.
So Lindsay, our co-founder and resident neuroscience researcher, is hosting a virtual get-together: Catching Up: Insights from AAIC 2026.
She'll walk through the latest science through the lens of what it actually means, and what truly matters for our community, and we'll all get some time with people who just get it. Come for the science, stay for the people. Hope to see you there! |
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| Marty
Cofounder & Volunteer |
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Wednesday, August 26 | 11:00am CT Join us for an informal virtual update from Youngtimers co-founder Lindsay covering the latest news from AAIC 2026 and the DIAD Family Conference in London last month. |
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New Support Group for Clinical Trial Participants & Support Partners |
Youngtimers is launching a new Clinical Trials Support Group for people affected by FAD who are involved in research. If you're currently enrolled in a study, considering enrollment, or acting as a support person, you're invited to join. Attendees face similar challenges around the specific stresses of trial participation: not knowing your trial-arm assignment, undergoing invasive procedures, facing anxiety around results disclosure, sustaining motivation through multi-year timelines, and navigating family dynamics around a loved one's participation.
The group officially launches in September and will meet the last Thursday of every month at 3:30pm CT. |
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NEW!
Clinical Trial: Starts Thurs, Sept 24 at 3:30pm CT (US) Caregivers (All Stages): Sat, Aug 15 at 12pm CT (US) At-Risk/Asymptomatic: Sun, Aug 16 at 2pm CT (US) Symptomatic: Wed, Aug 26 at 4:30pm CT (US) Caregivers (Early Stage): Tue, Aug 18 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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A Retreat for the FAD Community |
Youngtimers co-founder Alicia is hosting a 3-day retreat for individuals whose lives have been shaped by familial Alzheimer's disease. The retreat will offer a place for facilitated conversation, community connection, reflection, and deep rest. Want to learn more? Reach out to Alicia at Alicia@fadretreat.org. |
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Rather than treating memory loss after damage is done, Alzheimer's research increasingly looks to prevent the loss from ever starting. This month, we highlight three recent reports that illustrate this extraordinary shift.
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The significance of this sweeping Cell review is not one single discovery, but how dramatically the Alzheimer's field has moved from describing the disease (1906), to measuring its pathology in the living brain (2004), proving that modifying underlying biology can slow clinical decline (2022), and increasingly trying to prevent symptoms before they ever begin (2012–present). For families affected by FAD, advances in blood biomarkers, amyloid-lowering treatments, genetics, tau, and immune biology offer remarkable hope that the next generation may face a vastly different diagnosis than families do today. (Cell)
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Trontinemab rapidly cleared brain amyloid, kept Alzheimer's-related blood biomarkers low, and produced only two mild, asymptomatic cases of ARIA-E among 126 participants in this open label extension study. Although a larger trial must establish its clinical benefit and safety, the ability to deliver an antibody efficiently into the brain could make long-term, and eventually preventive, amyloid treatment considerably more practical. (AlzForum) |
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After successfully removing amyloid from the brain in symptomatic participants, Roche now plans to test that same drug in 1,600 cognitively healthy people: people who show biological evidence of Alzheimer's but no cognitive impairment. This trial aims to determine whether treatment can delay the onset of symptoms. (AlzForum) |
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Wrapping up the 2026 DIAD Family Conference
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Last month, Youngtimers welcomed families, researchers, and clinicians from 15 countries to London for a weekend of connection alongside the 2026 DIAD Family Conference. |
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FUNDRAISER
The National Brain Appeal FAD family member Peter is running ten half marathons in 2026 to support The National Brain Appeal's Rare Dementia Support Fund. Learn more about his journey and support his cause. |
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"Only by purposefully bringing attention to our inner experience can we move from trance toward healing." -Tara Brach |
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Alzheimer's Research Opportunities |
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Mass General Hospital and Harvard Medical School are testing a coping and support program for individuals recently diagnosed with young-onset cognitive impairment and their care partners. If you're interested, contact mghresilienttogetheryod@mgb.org
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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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"This was my first meeting, and it made me wish I had attended much sooner. It was incredibly empowering to be surrounded by so many brave and inspiring people, all connected by the same questions, reflections, and emotions. I left the meeting with a profound sense of belonging to something greater than myself, and with renewed hope for the future." |
- DIAD Family Conference Attendee |
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