We support people impacted by familial Alzheimer’s disease with community, education and advocacy. |
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Hi *{{Informal Name}}*,
For many, January is a time of hope: new goals, renewed optimism, and excitement for the year ahead. For families impacted by FAD, that optimism can sometimes be hard to find. I’ve felt that lately, as I see family members in decline, and watch the struggle of others in the community.
Nevertheless, I find hope in the progress being made. Like many of you, I’ve been a participant in AD research for a long time (27 years in my case.) I also have the privilege of summarizing the research for Youngtimers monthly newsletters, so I see firsthand how research is moving at a breakneck pace. I’d like to use this opportunity to give you a brief overview of where we stand.
Through the work of groups like DIAN and countless other researchers, we've gained tremendous knowledge about disease progression. The introduction of effective anti-amyloid treatments has also allowed us to view the disease with much higher granularity.
Uncovering the Process of Alzheimer's
We're learning that while amyloid is a major contributor, it is not the only problem: |
- Some people have brains full of amyloid, but don't experience cognitive decline for quite some time.
- Current anti-amyloid treatments reduce amyloid load and slow decline, but they don't stop it completely in people who are already amyloid-positive.
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In some cases, amyloid appears cleared on a PET scan, yet autopsy reveals it remains in deep cortical areas.
- Removing amyloid reduces some tau species but not all, demonstrating the complexity behind the "amyloid cascade hypothesis".
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We're learning that reversing the disease once cognitive decline begins is complicated. It requires targeting many factors simultaneously. It is like trying to cure cancer after it has spread; the disease has already left its mark throughout the brain. In light of that, prevention appears to be the easier problem to tackle, though research continues to pursue curing the disease as well.
Diagnostics
Huge strides have been made in diagnostics. Thanks to the efforts of participants and researchers, we now have simple blood tests (e.g., p-tau217, GFAP, NfL) that provide massive insight for individuals and accelerate research. Soon, we will share a resource for these testing options on the Youngtimers website.
Upcoming or Ongoing Research
Using antibodies to activate the immune system, or ASOs (antisense oligonucleotides) to silence specific genes, researchers are pursuing: |
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Preventing amyloid formation before it begins.
- Removing amyloid and tau simultaneously.
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Mimicking resilience through autoimmune drugs or enhancing protective proteins.
- Increasing clearance speed via increased blood flow or increased blood-brain barrier permeability.
- Transforming toxic Aβ42 to non-toxic amyloids via a chemical which changes how it is cut (preventative, not reversing)
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For families like ours, of course, research can’t move fast enough. Still, I hope you can take some hope from this summary. There are a lot of people working very hard on this disease, and we're learning faster than ever before. |
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| Phil Powers Volunteer & Board Member |
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Fri, January 23, 2026 at 11am CT | 12pm ET | 9am PT (US)
Join us for this practical, informative workshop on everyday habits that support cognitive function. Hosted by Edmarie Guzmán-Vélez, PhD, this educational session will discuss factors that increase or reduce a person’s risk for Alzheimer's disease, and what those factors mean for people with genetic mutations that cause familial Alzheimer’s disease. |
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Speak up in support of immediate medicare coverage for early-onset Alzheimer's disease |
Voices of Alzheimer’s is asking every person impacted by Alzheimer’s to take a moment to show their support for the Bridging Relief in Delayed Government Enrollment for Young Onset Alzheimer’s Disease Act of 2025 (HR 6799).
Currently, people in the US with young-onset Alzheimer's face a devastating 29-mo wait for Medicare coverage, delaying treatment when it has have the most benefit. The BRIDGE Act would ensure faster access to Medicare coverage for people with young-onset Alzheimer’s. |
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Caregivers (All Stages): Sat, Jan 17 at 12pm CT (US) At-Risk/Asymptomatic: Sun, Jan 18 at 2pm CT (US) Symptomatic: Wed, Jan 28 at 4:30pm CT (US) Caregivers (Early Stage): Tue, Jan 20 at 3pm 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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“Thank you so much for being a home when I felt like I was very alone” |
- Youngtimers Community Member |
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In people with sporadic AD , a lower plasma Aβ42/40 ratio can identify those most likely to convert to amyloid-positive PET over time, consistent with Aβ42 being preferentially retained in the brain (with less in the plasma). In autosomal-dominant AD, mutations can alter Aβ production/processing, so sporadic cutoffs regularly do not translate cleanly and can be misleading without mutation-specific calibration and/or additional biomarkers. (The Journal of Prevention of Alzheimer's Disease)
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The 18th annual Clinical Trials on Alzheimer’s Disease (CTAD) conference took place from Dec 1- Dec 4 in San Diego, CA. At this year's conference, researchers emphasized that the goal is no longer just getting antibodies across the blood–brain barrier, but steering them to brain tissue (parenchyma) instead of blood-vessel drainage routes where vascular amyloid lives. Roche presented updated results from a trial of trontinemab, a transferrin-receptor (TfR) “brain shuttle” version of an anti-amyloid antibody, showing large amyloid-PET reductions over 28 weeks, significantly faster than any existing options. (AlzForum)
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Also at CTAD, speakers argued that “inflammaging” is a powerful driver of neurodegeneration and that Alzheimer’s may ultimately need stage-specific combination therapies (not just one target). The meeting highlighted several approaches now in or near early trials—including lipid-pathway inhibitors, oxidative-stress modulators, microglia/TREM2 strategies, and vascular inflammation targets. (AlzForum) |
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Community, Conversation, Connection |
Introducing Coffee with Courtney a weekly, come-as-you-are virtual space for anyone in the Youngtimers community. There’s no agenda and no expectations, just an open hour to connect, talk, listen, or simply be together. Whether you have something on your mind or just want to share a cup of coffee and community, you’re always welcome. Our first gathering will be Thursday, January 29th at 10am Central If you're interested in joining, email courtney@youngtimers.org |
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QUOTE
"To some extent... you know how this is going to end. But between the beginning and the end, there's the middle. And in the middle, you have a lot of agency and choice that fate cannot lock you into."
- Lisa Genova |
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CAREGIVING Memory Cafes Near You Memory cafes are a place where people experiencing cognitive challenges along with caring family members, friends and professional caregivers can find meaningful programming, friendship, and acceptance. |
BOOK Remember
The Science of Memory and the Art of Forgetting by Lisa Genova |
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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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