Hi there,

This summer's AAIC (Alzheimer's Associational International Conference) in London included more than 7,800 scientific submissions, and as happens every year, there was a slew of Alzheimer's press coverage after the event. But what parts of the research matter most to families with familial Alzheimer's disease? Our August workshop aimed to answer that question.

Some highlights: 

Check out the full event recap here.

With so many hopeful drugs moving through the pipeline, it helps to understand how they move. What do Phase 1, Phase 2, and Phase 3 actually mean? How likely is a Phase 1 drug to make it all the way to approval?

Dr. Ross Paterson presented on this topic at the 2026 Family Conference, and has agreed to do a virtual Youngtimers webinar to answer the same questions. I hope you’ll join us on Tuesday, September 22 at 11 AM Central. He’ll explain the process, then walk us through one real Phase 1 tau study he leads.

Register Here: Phases and Stages of the Alzheimer's Clinical Trial Pipeline

I hope to see you there!

Erin

Board Member & Volunteer

Upcoming Events

Tuesday, September 22 | 11:00am CT

Dr. Ross Paterson has agreed to bring his presentation from the 2026 Family Conference directly to Youngtimers. In this webinar, he will explain the phases and stages of the Alzheimer's trial pipeline, then he’ll lead us through one real Phase 1 tau study from its first design through what participants experienced.

Tuesday, October 20 | 11:00am CT

GINA provides meaningful protections for genetic information. What does that mean? And how does new blood biomarker testing fit in?

Join us for a live virtual workshop with Jalayne J. Arias, JD, MA, Associate Professor at Georgia State University's School of Public Health, to learn about all this and more.

Wednesday, November 4th | 9:00am CT

Blood tests for Alzheimer's are moving fast, and more FAD families are asking what results actually mean.

Join us for a live workshop with researchers Dr. Eric McDade and Dr. Suzanne Schindler, alongside FAD community members Phil and Marty, moderated by Youngtimers co-founder Lindsay.

We'll cover what markers like p-tau217, NfL, and GFAP can and can't tell you, plus the real experience of deciding whether to test and living with the results. Submit any questions in advance to courtney@youngtimers.org. 

Members of the Dominantly Inherited Alzheimer’s community are invited to Designing the Life You Want for Those Who Have Been Shaped by Familial Alzheimer’s Disease, January 5–7, 2027.

Held at 1440 Multiversity in Scotts Valley, California, the gathering offers reflection, connection, and personal growth. Lodging and the workshop are complimentary, with travel assistance available based on need. DIAN researchers, in collaboration with Youngtimers, are studying the gathering’s effects on well-being and mental health. Research participation is optional.

Space is limited. Priority is given to those who have not participated in a drug trial.
Contact Alicia Brasch at fadretreat@gmail.com.

Upcoming Support Groups

NEW!
Clinical Trial: Starts Thurs, Sept 24 at 3:30pm CT (US)

Caregivers (All Stages): Sat, Sept 19 at 12pm CT (US)

At-Risk/Asymptomatic: Sun, Sept 20 at 2pm CT (US)

Symptomatic: Wed, Sept 30 at 4:30pm CT (US)

Caregivers (Early Stage): Tue, Sept 15 at 7pm CT (US)

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.

At our family conference, we were reminded just how global this community really is. We now have Youngtimers families in 27 countries! As we keep growing, we want to make sure we're reaching people in the languages they're most comfortable with. If you speak a language besides English, email us at info@youngtimers.org and let us know. It'll help us decide where to focus things like translated materials down the road.

In Alzheimer's News

A new study (not yet peer-reviewed) confirms that Alzheimer’s blood biomarkers rise and fall predictably over the course of a day, with the same researchers previously measuring daily variation of 15.8% in p-tau217, 10.6% in NfL and about 15% in Aβ40 and Aβ42. Time of day is also only one source of variability - factors such as hydration, recent strenuous exercise, and kidney function can influence blood measurements - so a modest change between two tests should be interpreted cautiously rather than automatically assumed to represent disease progression. (medRxiv)

Up to 14 years after an experimental amyloid vaccination, treated Alzheimer’s brains showed less plaque-associated p-tau217 and other phosphorylated tau, less astrocyte activation and remarkably little of the synapse loss normally found around plaques. For families hoping that early amyloid treatment can do more than simply make PET scans look better, this study provides compelling biological evidence that amyloid removal may alter several downstream parts of the disease process. This study is a preprint (medRxiv) and has not yet undergone peer review.

Instead of asking only whether Aβ42 is high relative to Aβ40, researchers measured how the entire balance of five amyloid peptides deviates from a healthy pattern. Their new “theta” measure performed extremely well across many different PSEN1 mutations, although it has so far been tested in laboratory cell models rather than blood or CSF from people. (npj Systems Biology and Applications)

This summer, we set out to raise $5,000 through our new Youngtimers Circle monthly giving campaign, and thanks to this community, we surpassed that goal! Eleven family members joined the Circle as monthly donors, giving a total of $175 each month, and four generous one-time gifts added $5,450 to our campaign. To everyone who joined or gave, thank you.

This kind of steady support helps us plan ahead and keep showing up for families affected by FAD.

This Month's Inspiration

WRITING WORKSHOP

Exploring Grief & Healing Through Poem-Making

A free, ongoing virtual poem-making workshop from UCSF's MERI Center, open to anyone grieving. No writing experience needed, and you can join as often as fits your schedule.

RESOURCE

Paws for Compassion

This program offers resources for people with Alzheimer's disease on caring for and planning ahead for their pets. 

BOOK

The Remember Balloons

A gentle picture book recommended for talking with kids about Alzheimer's and memory loss, using balloons as a sweet metaphor for memories. 

By Jessie Oliveros

POLICY

ASAP Act

We are proud to join over 525 advocates, researchers and clinicians urging Congress to pass the bipartisan Alzheimer's Screening and Prevention (ASAP) Act. This bill is an essential step toward ensuring patients, families, and providers can benefit from the next generation of Alzheimer’s innovations. 

Alzheimer's Research Opportunities

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

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.

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.

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's disease. If you’re interested, contact dianexr@wustl.edu.

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