DIAN EXR Newsletter: Vol. 7, Issue 2

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Your Contribution Can Help Change the Future of Alzheimer’s Disease

To all our DIAD family members:  

Thanks to participants like you, recent DIAN studies have shown that new treatments may reduce the onset and progression of dementia by up to 50%. This is a major step forward—but we’re not finished.  

Right now, we’re entering the most important phase of our research. To fully understand how these treatments work over time, we urgently need long-term data from everyone who has participated in DIAN studies, including those who have taken a break from study visits. Even after time away, your data remains valuable. Each additional visit provides critical information that strengthens the global effort to prevent Alzheimer’s disease for you, your family, and future generations.  

If you previously participated in DIAN, please consider returning. If you know someone who previously participated, share this message with them. Your continued involvement after any DIAN study (the DIAN Observational Study or DIAN-TU clinical trial) helps us better understand how the brain changes and how we may stop this disease.  

To learn how to rejoin, contact the DIAN Expanded Registry (dianexr@wustl.edu or +1-844-342-6397) or reach out directly to your previous DIAN Obs or DIAN-TU trial study site.  

Your participation makes a real difference. Together, we can help change the future for families everywhere.  

View Dr. Eric McDade’s presentation on DIAN Observational Study reengagement from the 2025 DIAD Family Conference. (More Family Conference videos will be posted online in late September 2025.) 

Gathering in Sydney: Australia and New Zealand Family Conference 

The first regional DIAD Family Conference for Australia and New Zealand was held in Sydney at Neuroscience Research Australia (NeuRA) on May 29, 2025. Many families in this region have shared that traveling long distances to international DIAD Family Conferences poses significant challenges. A locally hosted conference allowed more families to attend, connect, and access valuable support closer to home.  

Researchers, clinicians, and support professionals shared scientific updates and engaged in open, meaningful discussions with families. Presentation topics included brain health strategies, recent research developments in Alzheimer’s disease, emerging therapies targeting tau and biomarkers, and powerful personal reflections from DIAD family members and support persons. 

One of the most significant outcomes of the day was the sense of connection among attendees. The psychological toll of living with or supporting someone with DIAD has long been a prominent issue within the community. Through dedicated breakout sessions and open conversations, the emotional and psychological burden was addressed with empathy and honesty. Families were offered practical strategies, referral pathways, and reassurance that their mental health needs are valid and important.  

Hearing from other DIAD community members who are navigating their own journeys, whether as gene variant carriers or as support people, helped foster a sense of hope, solidarity, and resilience. Presentations from researchers helped reinforce that the scientific community is actively working toward solutions. Coupled with practical information on brain health, genetic testing, and care planning, the conference helped attendees feel more capable of actively supporting their health and wellbeing.  

Dr. Bill Brooks was also recognized following his retirement. Bill has contributed enormously to the field of DIAD, whilst making meaningful connections with each and every family he has had the pleasure of meeting. He has set the foundation for how DIAD research is conducted not only in Sydney, but across Australia and even to New Zealand. For Bill, the DIAN project isn’t just about the scientific method, it’s about helping the families through their journeys – an attitude that many researchers aspire to uphold. 

The conference was made possible through the generous support of the DIAN network, Neuroscience Research Australia (NeuRA), the Alzheimer’s Association, Dementia Australia, and the speakers. 

Thanks to Emily Kerameas, Study Coordinator at NeuRA, for reporting on this conference. And stay tuned for coverage of the 2025 DIAD Family Conference in Toronto in our year-end newsletter! 

Pictured: DIAN question-and-answer panel during the Australia & New Zealand Family Conference 

Pictured: DIAN-TU principal investigators and coordinators from the Sydney, Melbourne, and New Zealand DIAN-TU sites 

A Collaborative Art Project for DIAD Family Members, Caregivers, and Supporters

At the DIAD Family Conference held in Toronto, Canada, on July 26, attendees created art in the shape of a tree to recognize ten years of DIAD Family Conferences. Those present could add “leaves” to the tree and were encouraged to write messages to themselves ten years ago, a message for the present, and/or a message for ten years from now. They could also contribute a photo, poem, or other memento (that is smaller than the palm of your hand) to permanently attach to this artwork.   

DIAD family members, supporters, and caregivers who weren’t able to attend the conference (or who didn’t get a chance to interact with the artwork) can still contribute! Please send your message(s) and/or mementos Jen Romnes at the address in the graphic to add to the tree by September 30, 2025. 

Update on Funding for DIAN Observational Study

The DIAN Observational Study (DIAN Obs) has received approval from the US National Institutes of Health (NIH) for an additional year of bridge funding. This one year of bridge funding, beginning July 1, 2025, provides support to DIAN Obs US-based sites during the resubmission of the grant application. However, this one year of bridge funding does not include sites located outside of the US, per NIH restrictions. DIAN Obs leadership has secured alternative funding to support DIAN Obs sites outside of the US through the Alzheimer’s Association and GHR Foundation, which will provide support to these sites during this next year, ensuring continued study access globally. 

If you are a DIAN Obs participant enrolled at a site outside of the US previously supported with NIH funds, you may be contacted by your study staff with further information on any visits scheduled after June 30, 2025, as a slight delay to study visits may be experienced while work is done to transition sites to the alternative funding source. 

All participants co-enrolled in DIAN Obs and the DIAN-TU-003 ART study are able to proceed as scheduled, with funding support through the Alzheimer’s Association via the DIAN-TU. 

There are no further updates on additional funding for DIAN-TU grants at this time. We will share information as it becomes available. 

Drs. Randall Bateman and Eric McDade 

Video Gallery on DIAN Website

Have you browsed the DIAN video gallery recently? A wealth of video content is available from past DIAD Family Conferences and other presentations. Check out this newsletter editor’s personal favorites, such as scientific presentations by Dr. Jason Hassenstab about cognitive assessment and Dr. Subhojit Roy about CRISPR, family stories from 2019 and 2022, or a panel discussion about research participation risks and rewards. 

You can also search for videos by topic, using either the menus on the page or using the search bar to find a particular speaker or subject. In addition, you can click on a language at the top of the page to access videos that have been translated and/or subtitled in that language. Some videos are password-protected and only available to DIAD family members; complete the form provided below those videos (and don’t forget to tell us which video you want to see!) to receive the password. 

The Value of Brain Donation

The donation of a brain is one of the most valuable gifts a person can make to the field of Alzheimer’s research. In a video presentation followed by question-and-answer session, professionals working in the field of brain research share details about how brain donation works and its role in scientific discovery. While some of the logistics of brain donation are specific to the Knight AD Research Center’s Memory and Aging Project, the overall information about how brain donation works is applicable to anyone interested in the process. Access the video from the Knight AD Research Center (You will be asked to complete a form to access the video.) 

Participants in DIAN research who want to learn more about brain donation through DIAN can visit our website to learn more and find contact information for the brain donation team. 

Alzheimer’s in the News

Three Siblings, One Fatal Gene: A Family’s Fight Against Early-Onset Alzheimer’s 

Alzheimer’s hope: Sleep aid blocks up to 40% more harmful tau deposits 

Drug to slow Alzheimer’s well tolerated outside of clinical trial setting 

Terminated, Delayed—AD Scientists Weather Storm of Uncertainty 

Faster, cheaper, better: the rise of blood tests for Alzheimer’s 

Night-Night, Neurodegeneration: Sleep Aid Lulls Tau Pathology 

Recent DIAN Publications

Sample size estimates for biomarker-based outcome measures in clinical trials in autosomal dominant Alzheimer’s disease 

Early increase of the synaptic blood marker β-synuclein in asymptomatic autosomal dominant Alzheimer’s disease 

Longitudinal associations between self-reported exercise levels and cognition in ADAD 

For a full list of publications using DIAN Obs and DIAN-TU data, visit PubMed.

DIAN Obs and DIAN-TU data are increasingly published in scientific reports to advance scientific understanding of Alzheimer’s disease. There is a marginal risk that a participant reading or hearing of these scientific reports might guess, correctly or incorrectly, information including their own or a family member’s mutation or treatment status. We take every step to minimize this risk, including ensuring that all study data lack identifying information, but de-identified data may reveal a pattern suggesting a person’s mutation or treatment status. Avoid articles or presentations related to our studies to decrease this risk.

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If you are interested in research opportunities,
contact the DIAN Expanded Registry at dianexr@wustl.edu.