We support people impacted by familial Alzheimer’s disease with community, education and advocacy. |
|
|
Hi *{{Informal Name}}*,
I just returned from being a panelist at a pharma company conference, and someone asked me why I continue being so public, which really made me think…
I share my journey openly because so many people can’t—perhaps for work ramifications, family dynamics, privacy concerns, the common fear of public speaking, or other reasons. Some friends here simply don’t want their diagnosis—or risk—to define them publicly. That’s 100% understandable. For me, I’m passionate that this disease does not go under-represented, misunderstood, or spoken about without the input of the people actually living with it.
I choose to speak because I’m in a position to do so. Visibility matters. When stories aren’t shared, isolation grows. When voices are missing, decisions are made without us in mind—by researchers, policymakers, employers, and even healthcare systems.
Sharing my story isn’t just about being inspirational. It’s about helping make the reality of this disease easier to understand and harder to ignore. If being open helps normalize these conversations or reduces the sense of being alone for someone else, then continuing to share is worth it.
In the end, I believe everyone should know about FAD in case their family could join us in contributing toward a cure — study participants are the critical key component, so we need as many of them as possible. And this disease is so devastating to patients and their families, I want to do everything I can to end it. If you have the desire to speak more publicly about FAD, please reach out; there are always more opportunities to do so. |
|
|
Thur, March 19, 2026 at 11am CT | 12pm ET | 9am PT (US) Have you ever considered genetic testing and wondered how a positive DIAD mutation result might affect life over time?
Jetske Van der Schaar, MSc and PhD candidate, surveyed members of the DIAN community to better understand the long-term personal impact of genetic testing. Join us as she shares key insights from this important research, including how individuals experience and navigate life after learning their genetic status. We’ll leave time at the end for open discussion and questions about genetic testing. We hope to see you there! |
|
|
Thursdays at 10am CT | 11am ET | 8am PT (US)
Coffee with Courtney is a weekly, come-as-you-are virtual space for anyone in the Youngtimers community. Hosted by Youngtimers team member Courtney, this relaxed gathering has 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. From time to time, a special guest may also stop by to join the conversation. |
|
|
The Alzheimer’s Foundation of America is now accepting applications for its 2026 Teen Alzheimer’s Awareness Scholarship. High-school seniors can submit an essay or video about how Alzheimer’s has impacted their lives for a chance to earn scholarship support. Applications are being accepted through March 1, 2026. |
|
|
Caregivers (All Stages): Sat, Feb 21 at 12pm CT (US) At-Risk/Asymptomatic: Sun, Feb 15 at 2pm CT (US) Symptomatic: Wed, Feb 25 at 4:30pm CT (US) Caregivers (Early Stage): Tue, Feb 17 at 3pm 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. |
|
|
"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 Support Group Attendee |
|
|
In Swedish autosomal-dominant FAD families, a blood marker of astrocyte activation (GFAP) tracked brain energy changes and cognition more strongly in APP mutation carriers than PSEN1 carriers. As access to plasma based biomarkers increases, this is a reminder that “a positive biomarker” can mean different things across FAD types. (Translational Psychiatry) |
|
|
Crenezumab was built to target amyloid oligomers (small, soluble clusters thought to be especially toxic), and prior human CSF studies show it can lower oligomer levels—evidence of target engagement. But in this 5–8 year prevention trial in PSEN1 E280A carriers, it did not significantly remove fibrillar plaque amyloid (the insoluble “threads” that form plaques measured well by amyloid PET) and did not significantly slow cognitive decline. These findings reiterate that not all amyloid is created equal and the importance of identifying and targeting the right type of amyloid for FAD patients. (The Lancet Neurology)
|
|
|
The study looked at extracellular vesicles (EVs) - microscopic “packages” that cells release into the blood carrying proteins and signals to other cells. EVs from people with the protective APOE3 Christchurch variant carried fewer inflammation and blood-vessel “stress” signals, suggesting a calmer, more protected brain environment early in disease. (Alzheimer's & Dementia) |
|
|
Every experience in our community matters, and we’re excited to share that we’re preparing an article for npj Dementia's "The Human Connection - Bridging lived experience and scientific discovery in dementia research" Collection, which welcomes essays and personal perspectives from patients, at-risk individuals, and care partners. We hope to amplify real stories from our community and highlight how this journey shapes life emotionally, socially, and day to day. If you’re open to sharing your story, in whatever way feels comfortable, we’d love to hear from you. Please email courtney@youngtimers.org. Your voice can help bring lived experience into the scientific conversation. |
|
|
POEM
New Year's Poem
New Year. It will not be
what you plan or what you chart.
Remember, Dear? It never is.
The lines will not run straight
or the surfaces be smooth.
After all, the curriculum
is given, not chosen.
New Year.
Today, do not resolve
anything for yourself.
Resolve something for all of us.
The very heart of time
is begging us to never
wish for I again,
to ask only for us.
by Tara Mohr |
| QUOTE "We are here to awaken from the illusion of our separateness" -Thích Nhất Hạnh |
BOOK Come Grandpa Meow, Let's Fly A Heartfelt Children’s Story About Alzheimer’s Disease Plus a Guide to Intergenerational Activities by Carol Steinberg |
|
|
Alzheimer's Research Opportunities |
|
|
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 disease. If you’re interested, contact dianexr@wustl.edu. |
|
|
You are being sent this email because you are a subscriber. If you wish to update your Email Preferences or Unsubscribe, click *{{Unsubscribe}}* |
|
|
|
