2022 DIAD Family Conference: (re)UNITED!

The 2022 DIAD family conference took place on July 30th, 2022 in San Diego, CA, USA.  Please click on hotlinks below to watch video recordings of the presentations. Click here for biographies of conference speakers.

AGENDA (times listed in Pacific Daylight Time, PDT)

8:00-8:15 Welcome remarks: Eric McDade, DO, Master of Ceremonies, Washington University in St. Louis; Welcome remarks Maria Carrillo, PhD, Alzheimer’s Association and Billy Dunn, MD, US FDA

8:15-8:25 Family presentation

8:25-9:30 DIAN-TU Updates: Secondary Prevention: Randall Bateman, MD; Primary Prevention & Cognitive Run In (CRI): Eric McDade, DO;  New site outreach & next steps: Jorge J. Llibre-Guerra, MD, Washington University in St. Louis

9:30-9:40 Family presentation

9:40-10:00 How amyloid burden varies across DIAD genotypes: Jasmeer Chhatwal, MD PhD, Harvard Medical School, Massachusetts General Hospital

10:00-10:20 BREAK

10:20-11:00 Q & A – Guided discussion:
Moderators: Nick Cochran, PhD & Eric McDade, DO
Panelists: Juliana Acosta Uribe, MD PhD, University of California, Santa Barbara; Randall Bateman, MD; Jasmeer Chhatwal, MD PhD; Carlos Cruchaga, PhD, Washington University in St. Louis; Natalie Ryan, MRCP PhD, University College London

11:00-11:10 Family presentation (This presentation is password protected.  Please email dianexr@wustl.edu to request the password)

11:10-11:30 Young people’s stories of experiencing parental dementia: Mel Hall, PhD Manchester Metropolitan University

11:30-12:15 Q & A – Guided discussion
Moderator: Lindsay Hohsfield, PhD
Panelists: Caroline Gelman, LCSW, PhD, Hunter College; Mel Hall, PhD; Darby Morhardt, PhD, Northwestern University; Pat Sikes, PhD, University of Sheffield; family members

12:15-1:30 Closing remarks and family tribute song; Invitation to LUNCH

1:00-1:30 Scientific poster session

1:30-2:30 Finding meaning in the face of adversity: Katie Sandler, MA, Impact Coach; with virtual Q&A

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

1. DIAD 101: An introduction to dominantly-inherited Alzheimer’s disease: Lindsay Hohsfield, PhD, University of California, Irvine
2. DIAD 201: Advanced understanding of dominantly-inherited Alzheimer’s disease: Nick Cochran, PhD, HudsonAlpha Institute for Biotechnology
3. Genetic counseling considerations in DIAD: Meagan Cochran, MS, CGC, HudsonAlpha Institute for Biotechnology
4. Ins and outs of DIAN-TU trial participation: Open forum for questions with Randall Bateman, Jorge Llibre, Eric McDade, Leigh Abbott, Stephanie Belyew, Susan Mills, Jennifer Petranek, Ellen Ziegemeier – Washington University in St. Louis
5. Caregiving: Early-stage and Caregiving: Mid-to-late stage: Beth Kallmyer, MSW, Alzheimer’s Association
6. Drop-in support session with topic tables
a. Post genetic testing: Coping with risk and how it changes over time
b. Grief: Dealing with the loss of a loved one
c. Communication: How to talk about DIAN, risk, and disclose genetic status
d. Living with symptoms: Discussion space for symptomatic family members
e. Catching your breath

Reception for family members and researchers

Funding for the DIAD Family conference was made possible by the Alzheimer’s Association and by grant #AG055232 from the National Institute on Aging. The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the NIH; nor does mention by trade names, commercial practices, or organizations imply endorsement by the U.S. Government.