2023 Regional DIAD Family Conference: A New Era

The 2023 regional DIAD family conference for families living in Europe was held on Saturday, July 15th, in Amsterdam, The Netherlands.  Please click on hotlinks below to watch video recordings of the presentations.  Click here for biographies of conference speakers.

AGENDA (times listed in Central European Summertime, CEST)

9:00-0:15 Welcome remarks: Eric McDade, DO, Master of Ceremonies, Washington University in St. Louis; Welcome remarks Maria Carrillo, PhD, Alzheimer’s Association

9:15-9:25 Family presentation: Ingrid van Goor

9:25-9:45 Understanding amyloid-modifying therapies: focus on Amyloid-Ab: Jort Vijverberg, MD, PhD, Amsterdam University Medical Centers

9:45-10:25 Q&A – Guided discussion: Understanding amyloid-modifying therapies
Moderator: Eric McDade, DO
Panelists: Jort Vijverberg, MD, PhD; Ingrid van Goor; Jetske van der Schaar, MSc, Amsterdam University Medical Centers; Michael Irizarry, MD, MPH, Eisai; Mathias Jucker, PhD, University of Tübingen; Egbert de Groot, PhD, Zorginstituut Nederland; Randall Bateman, MD, Washington University in St. Louis

10:25-10:55 BREAK

10:55-11:05 Family presentation: The Acceptance of Uncertainty: Alicia Brasch

11:05-11:25 A CRISPR-based therapeutic strategy for Alzheimer’s disease: Subhojit Roy, MD, PhD, University of California, San Diego

11:25-12:05 Q&A – Guided discussion: Understanding genetically targeted drug technologies
Moderator: Eric McDade, DO
Panelists: Subhojit Roy, MD, PhD; Alicia Brasch; Selina Wray, PhD, University College London; Catherine Mummery, PhD, University College London; Bret Bostwick, MD, Alnylam Pharmaceuticals

12:05-12:15 Family presentation (This recording  is password protected. Please email dianexr@wustl.edu to request the password if you are a member of a family living with dominantly-inherited Alzheimer’s disease).

12:15-12:45 DIAN-TU Updates: Randall Bateman, MD & Eric McDade, DO; Washington University in St. Louis

12:45 Closing remarks for morning session: Eric McDade, DO & Marty Reiswig, BS, Youngtimers

The afternoon concluded with practical information sessions for family members only. These sessions were only available to those attending the conference in person (no livestreaming). Topics included:

1. Maintaining Brain Health through Lifestyle – Lindsay Hohsfield, PhD
2. Life Planning with a Positive Genetic Result – Freek Gillissen, BA
3. DIAN-TU Trial Participation: Open Forum for Questions – Randall Bateman, MD; Eric McDade, DO; Jorge J. Llibre-Guerra, MD; Johannes Levin, MD
4. Navigating the Journey of Grief – Lenneke Post, MA
5. Family Dynamics and Talking to Children – Vivianne Teeuwen, BS
6. German Family Support – German-language conversation space – Mathias Jucker, PhD
7. Drop-in support session with topic tables
a. Living with symptoms: Discussion space for symptomatic family members
b. Caregiving: Discussion space for caregivers
c. Family planning: Discussion space for navigating fertility decisions
d. Catching your breath: Prompts for journaling or self-guided garden walk

Reception for family members and researchers

Funding for this conference was made possible by the Alzheimer’s Association in the United States and the DIAN Observational Study (NIH#:U19AG032438). The views expressed by the authors of written conference materials or publications and by speakers and moderators do not necessarily reflect the official views of the United States National Institutes of Health.