The 2024 regional DIAD family conference for families living in Canada and the United States was held on Saturday, July 27 in Philadelphia, Pennsylvania, USA. Please click on the active links in the conference agenda below to access recordings of the presentations.
Conference Agenda
8:00-8:15 am: Welcome remarks: Master of Ceremonies
Eric McDade, DO, WashU Medicine; Heather Snyder, PhD, Alzheimer’s Association
8:15-8:25 am: Family presentation: Tasha Johnson
8:25-8:45 am: Scientific presentation: Estimating Onset of Alzheimer Disease Symptoms with an Amyloid Clock
Suzanne Schindler, MD, PhD, WashU Medicine
8:45-9:25 am: Guided Q&A: Moderator: Eric McDade, DO; Panelists: Suzanne Schindler, MD; Teresa Buracchio, MD, US Food & Drug Administration; Erik Johnson, MD, PhD, Emory University; Kristin Wildsmith, PhD, Eisai Co. Ltd.; Family speaker
9:25-9:40 am: Break
9:40-9:50 am: Family presentation: Jessica Bender
9:50-10:10 am: Scientific presentation: Tau and Tau Therapies 101
Erik Roberson, MD, PhD, University of Alabama at Birmingham
10:10-10:50 am: Guided Q&A: Moderator: Eric McDade, DO; Panelists: Erik Roberson, MD, PhD; Randall Bateman, MD, WashU Medicine; Ross Paterson, PhD, University College London; Family speaker
10:50-11:05 am: Break
11:05-11:15 am: Family presentation 3 (password-protected)
11:15-11:50 am: DIAN Observational Study & DIAN Trials Unit updates: Randall Bateman, MD (Secondary Prevention: video coming soon); Eric McDade, DO (Primary Prevention), WashU Medicine
11:50 am: Closing remarks for morning session: Eric McDade, DO
12:00-1:30 pm: Lunch
1:30-2:30 pm: DIAN Obs & DIAN-TU Q&A session with Observational Study and Trials Unit leaders
2:30-2:45 pm: Break
2:45-3:45 pm: Genetic testing presentation and panel Q&A (password-protected)
. . .
Please email dianexr@wustl.edu with any questions about the 2024 conference.
Funding for this conference was made possible by the Alzheimer’s Association, GHR Foundation, the DIAN Trials Unit, and the DIAN Observational Study (which is funded by grant #5U19AG032438 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.
May 20, 2023
coming soon
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. View biographies of conference speakers.
Conference Agenda
9:00-9:15 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:
- Maintaining Brain Health through Lifestyle – Lindsay Hohsfield, PhD
- Life Planning with a Positive Genetic Result – Freek Gillissen, BA
- DIAN-TU Trial Participation: Open Forum for Questions – Randall Bateman, MD; Eric McDade, DO; Jorge J. Llibre-Guerra, MD; Johannes Levin, MD
- Navigating the Journey of Grief – Lenneke Post, MA
- Family Dynamics and Talking to Children – Vivianne Teeuwen, BS
- German Family Support – German-language conversation space – Mathias Jucker, PhD
- 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.
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. View biographies of conference speakers.
Conference Agenda
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: Sandra and Daphnée
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: Andres Martin
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:
- DIAD 101: An introduction to dominantly-inherited Alzheimer’s disease: Lindsay Hohsfield, PhD, University of California, Irvine
- DIAD 201: Advanced understanding of dominantly-inherited Alzheimer’s disease: Nick Cochran, PhD, HudsonAlpha Institute for Biotechnology
- Genetic counseling considerations in DIAD: Meagan Cochran, MS, CGC, HudsonAlpha Institute for Biotechnology
- 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
- Caregiving: Early-stage and Caregiving: Mid-to-late stage: Beth Kallmyer, MSW, Alzheimer’s Association
- 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.
The seventh annual DIAD family conference was a series of virtual events held between July 26 and August 1, 2021. See below for the full agenda. View a summary of live events. Welcoming remarks by Dr. Eric McDade’s gave an overview of the conference agenda.
Welcoming remarks: Dr. Eric McDade’s gave an overview of the conference agenda.
Pre-Recorded Presentations
Youngtimers Ask the Expert: Understanding DIAD in the Context of Alzheimer’s Disease Research and Participation with Dr. Randall Bateman. Interviewer Lindsay A. Hohsfield, PhD (University of California, Irvine)
DIAD 201: Advanced Understanding of Dominantly Inherited Alzheimer’s Disease
Nick Cochran, PhD (HudsonAlpha Institute for Biotechnology)
Inflammation: A “Hot” Topic in AD
Cynthia Lemere, PhD (Brigham and Women’s Hospital/Harvard Medical School)
Tau Biology in Alzheimer’s Disease: The Basics
Erik Roberson, MD, PhD (University of Alabama at Birmingham)
DIAN-TU Tau NexGen Biomarker Trials
Randall Bateman, MD (Washington University School of Medicine)
DIAN-TU Primary Prevention Updates
Eric McDade, DO (Washington University School of Medicine)
2021 Family Video Presentation: (password protected)
LIVE Virtual Events
Practical Information Session: Mental Health (FAMILY Registrants Only) Session live-streamed on July 31, 2021. Pablo Bagnati, MD (FLENI Institute, Buenos Aires, Argentina). Fighting the Phantom of AD: Psychological Aspects and Coping Strategies
Practical Information Session: Planning Ahead (FAMILY Registrants Only) Session live-streamed on July 31, 2021. Overview of Key Terms and Concepts (30 min.) Beth Kallmyer, MSW (Alzheimer’s Association)
Panel: Question & Answer Session about Inflammation, Tau, and DIAN-TU Research (For ALL Registrants) – Session live-streamed on July 31, 2021. Moderator: Eric McDade, DO
Sunday Mental Health Break: A Yoga session sponsored by Youngtimers
Practical Information Session: Taking Action (FAMILY Registrants Only) Session live-streamed on August 1, 2021
Advocacy: John Funderburk (Alzheimer’s Association)
Healthy Living: Nick Cochran, PhD (HudsonAlpha Institute for Biotechnology)
The sixth annual DIAD family conference was a series of virtual events that took place online between July 20 and August 2, 2020.
Presentation Videos
DIAD 101: An Introduction to Dominantly-Inherited Alzheimer’s Disease
Lindsay Hohsfield, PhD, University of California, Irvine
DIAD 201: Advanced Understanding of Dominantly-Inherited Alzheimer’s
Disease
Nick Cochran, PhD, HudsonAlpha Institute for Biotechnology
DIAN-TU trial overview and next steps Part 1
DIAN-TU trial overview and next steps Part 2
Randall Bateman, MD, Washington University School of Medicine
Jorge Llibre-Guerra, MD, Msc, Washington University School of Medicine
DIAN-TU trial results: Imaging
Tammie Benzinger, MD, PhD, Washington University School of Medicine
Brian Gordon, PhD, Washington University School of Medicine
Nelly Joseph-Mathurin, PhD, Washington University School of Medicine
DIAN-TU trial results: Biomarkers, the power of CSF
Anne Fagan, PhD, Washington University School of Medicine
Panel: Question & Answer session about DIAN-TU Trial 001 results
Moderator: Eric McDade, DO, Washington University School of Medicine
Panelists: Randall Bateman, MD; Tammie Benzinger, MD, PhD; Anne Fagan, PhD;
Marty R.; Geoff Kerchner, MD, PhD, F. Hoffman La Roche; Karen C. Holdridge,
MPH, Eli Lilly and Company; Maria Carrillo, PhD, Alzheimer’s Association
Breakdown of curated AAIC scientific sessions with Question & Answer session
Eric McDade, DO, Washington University School of Medicine
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.
The fifth annual DIAD family conference took place on July 13th, 2019 in Los Angeles, CA, USA. View the 2019 Family Conference Agenda
Presentation videos
Welcome remarks
Eric McDade, D.O., Washington University School of Medicine, St. Louis, MO
Maria Carrillo, Ph.D., Alzheimer’s Association
Family presentation: Dan Chrysler
DIAN-TU updates
Randall Bateman, M.D., Washington University School of Medicine, St. Louis, MO
Family presentation: Brenda Monserrat
Genetics and Genomics of Alzheimer’s Disease
Alison Goate, D.Phil., Icahn School of Medicine at Mount Sinai
Q & A – Guided discussion: The Genetics of Alzheimer’s Disease
Moderator: Natalie Ryan, M.D.
Panelists: Ken Kosik, M.D.; Oscar Harari, Ph.D.; Alison Goate, D.Phil.
Therapeutic Updates: Making Sense of Antisense and Other Advancements in Precision Therapies
Tim Miller, M.D., Ph.D., Washington University St. Louis
Q & A – Therapeutic Updates
Moderator: Nick Cochran, Ph.D.
Panelists: Cath Mummery, M.D.; Frank Bennett, M.D., Ph.D.; Tim Miller, M.D., Ph.D.; Serena Hung, M.D.
Family presentation: The Journey of a DIAD Child
Primary Prevention Update
Eric McDade, D.O., Washington University School of Medicine, St. Louis
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.
2019 DIAD Family Conference Agenda
Master of Ceremonies
Eric McDade, D.O., Washington University School of Medicine, St. Louis, MO
Welcome remarks
Eric McDade, D.O., Washington University School of Medicine, St. Louis, MO
Maria Carrillo, Ph.D., Alzheimer’s Association
Family presentation
DIAN-TU updates
Randall Bateman, M.D., Washington University School of Medicine, St. Louis
Family presentation
Genetics and Genomics of Alzheimer’s Disease
Alison Goate, D.Phil., Icahn School of Medicine at Mount Sinai
Q & A – Guided discussion: The Genetics of Alzheimer’s Disease
Moderator: Natalie Ryan, M.D.
Panelists:
Ken Kosik, M.D.
Oscar Harari, Ph.D.
Alison Goate, D.Phil.
Family presentation
Therapeutic Updates: Making Sense of Antisense and Other Advancements in Precision Therapies
Tim Miller, M.D., Ph.D., Washington University St. Louis
Q & A – Therapeutic Updates
Moderator: Nick Cochran, Ph.D.
Panelists:
Cath Mummery, M.D.
Frank Bennett, M.D., Ph.D.
Tim Miller, M.D., Ph.D.
Serena Hung, M.D.
Family presentation
Primary Prevention Update
Eric McDade, D.O., Washington University School of Medicine, St. Louis
Concurrent practical information session topics
Legal/Financial aspects specific to U.S.: Lindsay H. Sanders, Esq., Stone & Sallus, LLP
Communicating your genetic risk to children, family, work, and your doctor: Elizabeth Edgerly, Ph.D., Alzheimer’s Association
Living well to delay AD: Sam Fazio, Ph.D., Alzheimer’s Association
What to expect in a genetic counseling session: Jill Goldman, M.S., M.Phil., C.G.C, Columbia University Medical Center
Family planning/reproductive considerations for individuals in the DIAD community: Jill Goldman, M.S., M.Phil., C.G.C. & Lindsay Hohsfield, Ph.D., University of California
Support sessions
Symptomatic family members: symptomatic individuals only
Asymptomatic, at-risk family members (2 groups)
Supporting family/friends of symptomatic individuals
Supporting family/friends of asymptomatic individuals
Grupo para hispanohablantes
The fourth annual DIAD family conference took place on July 21st in Chicago, IL, USA.
Presentation videos
Opening remarks
Eric McDade, D.O., Washington University School of Medicine, St. Louis
Harry Johns, President and CEO, Alzheimer’s Association
2008 – 2018: Ten Years of the Dominantly Inherited Alzheimer Network (DIAN)
John C. Morris, M.D., Washington University School of Medicine, St. Louis
Family Presentation: Jetske van der Schaar
Going Mobile: The Value of Remote Assessments for Alzheimer’s Disease Research
Jason Hassenstab, Ph.D., Washington University School of Medicine, St. Louis
Guided discussion: The use of mobile technology and AD registries to advance our understanding of AD and accelerate treatment
Moderator: Eric McDade
Panelists: Yen Ying Lim, Lara Mangravite, Jason Hassenstab, family members
Induced Pluripotent Stem Cells (iPSC): The skin in the game
Celeste Karch, Ph.D., Washington University School of Medicine, St. Louis
Guided discussion: Fibroblast derived iPSCs in Alzheimer disease the
how they are helping advance our understanding of Alzheimer disease and
accelerate treatment advancements
Moderator: Eric McDade
Panelists: Steve Wagner, Eric Karran, Celeste Karch, Lindsay Hohsfield
Family Presentation: Bryan Salter and Carrie Salter-Richardson
DIAN-TU updates
Randall Bateman, M.D., Washington University School of Medicine, St. Louis
Primary Prevention
Eric McDade, D.O., Washington University School of Medicine, St. Louis
Greeting from Mrs. Joanne Knight
Mrs. Joanne Knight
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.
2018 DIAD Family Conference Agenda
Master of Ceremonies
Eric McDade, D.O., Washington University School of Medicine, St. Louis, MO
Welcome remarks and updates
Harry Johns, President and CEO, Alzheimer’s Association
2008 – 2018: Ten Years of the Dominantly Inherited Alzheimer Network (DIAN)
John C. Morris, M.D., Washington University School of Medicine, St. Louis, MO
Family presentation
Going Mobile: The Value of Remote Assessments for Alzheimer’s Disease Research
Jason Hassenstab, Ph.D., Washington University School of Medicine, St. Louis
Q & A – Guided discussion: The use of mobile technology and AD registries to advance our understanding of AD and accelerate treatment
Moderator: Eric McDade
Panelists:
Yen Ying Lim
Lara Mangravite
Jason Hassenstab
Family members
Induced Pluripotent Stem Cells (iPSC): The skin in the game
Celeste Karch, Ph.D., Washington University School of Medicine, St. Louis
Q & A – Fibroblast derived iPSCs in Alzheimer disease the how they are helping advance our understanding of Alzheimer disease and accelerate treatment advancements
Moderator: Eric McDade
Panelists:
Steve Wagner
Eric Karran
Celeste Karch
Lindsay Hohsfield
Family presentation
DIAN-TU updates
Randall Bateman, M.D., Washington University School of Medicine, St. Louis
Closing remarks/Lunch with speakers/Poster session
Primary Prevention
Eric McDade, D.O., Washington University School of Medicine, St. Louis
Concurrent practical information session topics
The ethical implications of pre-symptomatic testing in Alzheimer’s
prevention trials – Josh Grill, M.D., University of California Irvine
Alzheimer’s 101: Basics of the science with Q & A – Nick Cochran, Ph.D.,
HudsonAlpha Institute for Biotechnology
Part 1: Legal/Financial specific to U.S. – Ruth Drew, M.S., L.P.C., Alzheimer’s Association
Part 2: Legal/Financial specific to U.S. – Ruth Drew, M.S., L.P.C., Alzheimer’s Association
Breaking the silence: How to tell family and friends about DIAD – David
Parris, L.C.S.W., Alzheimer’s Association
Support sessions
Symptomatic family members: symptomatic individuals only
Asymptomatic, at-risk family members (2 groups)
Supporting family/friends of symptomatic individuals
Supporting family/friends of asymptomatic individuals
Grupo para hispanohablantes
The third annual DIAD family conference took place on July 15th in London, England, and was the biggest gathering yet!
Read a letter from a conference attendee »
“As an at-risk carrier for an early-onset Alzheimer’s disease mutation, no words can express the gratitude I feel for having had the opportunity to participate in such a unique event.”
— Family Conference attendee
Presentation videos
Opening remarks
Master of Ceremonies: Eric McDade, D.O., Washington University School of Medicine, St. Louis, MO. Randall Bateman, M.D., Washington University School of Medicine, St. Louis, MO, Dean Hartley, Ph.D., Alzheimer’s Association, Eliezer Masliah, M.D. and Richard Hodes, M.D., National Institute on Aging
DIAN and DIAN-TU update
Randall Bateman, M.D., Washington University School of Medicine, St. Louis
The genetics of DIAD: then and now
Alison Goate, D.Phil., Icahn School of Medicine at Mount Sinai
DIAD families as the Key to the Cure: then and now
Nick Fox, M.D., University College London (UCL)
Family presentation: Sophie Leggett
Guided discussion: Participating in DIAD research: risk, challenges and the way forward
Moderator: Nick Fox
Panelists: Alison Goate, Natalie Ryan, John Morris, John Hardy, family member
Family presentation: The Family Business
How CSF sampling has and is advancing the field
Henrik Zetterberg, M.D., University of Gothenburg, Sweden & UCL
Where are we with trials?
Eric McDade, D.O., Washington University School of Medicine, St. Louis
Guided discussion: The critical role of DIAD research in pre-symptomatic Alzheimer’s disease
Moderator: Randall Bateman
Panelists: Henrik Zetterberg, Eric McDade, Pierre Tariot, Gary Romano, Rachelle Doody, Eric Siemers, Jason Hassenstab, family member
Family panel on genetic status
Moderator: Susie Henley
Closing Remarks
Eric McDade, D.O., Washington University School of Medicine, St. Louis
Funding for the DIAD Family conference was made possible by the Alzheimer’s Association and by grant #AG055232 from the National Institure 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.
2017 DIAD Family Conference Agenda
Master of Ceremonies
Eric McDade, D.O., Washington University School of Medicine, St. Louis, MO
Welcome remarks and updates
Randall Bateman, M.D. – Washington University School of Medicine, St. Louis, MO
Dean Hartley, Ph.D., Alzheimer’s Association
Richard Hodes, M.D., National Institute on Aging
The genetics of DIAD: then and now
Alison Goate, D.Phil., Icahn School of Medicine at Mount Sinai
DIAD families as the Key to the Cure: then and now
Nick Fox, M.D., University College London (UCL)
Family presentation
Q & A – Guided discussion: Participating in DIAD research: risk, challenges and the way forward
Moderator: Nick Fox
Panelists:
Alison Goate
Natalie Ryan
John Morris
John Hardy
Laurie Ryan
Family member
Preclinical aspects: How lumbar punctures have and are advancing the field
Henrik Zetterberg, M.D., University of Gothenburg, Sweden & UCL
Preclinical aspects: Where are we with trials?
Eric McDade, D.O., Washington University in St. Louis
Q & A – Guided discussion: The critical role of DIAD research in pre-symptomatic Alzheimer’s disease
Moderator: Randall Bateman
Panelists:
Henrik Zetterberg
Eric McDade
Pierre Tariot
Gary Romano
Rachelle Doody
Eric Siemers
Jason Hassenstab
Family member
Family presentation
Lunch with speakers/Poster session
Family panel on genetic status
Moderator: Susie Henley
Support sessions
- Symptomatic family members: symptomatic individuals only
- Symptomatic family members: with family members present
- Asymptomatic, at-risk family members (2 groups)
- Supporting family/friends of symptomatic individuals (2 groups)
Concurrent practical information session topics
Talking to children: Christine Patch, Ph.D., R.N., Registered Genetic Counselor; Genomics England & King’s College London
Living with risk: Susie Henley, Ph.D., DClinPsy; University College London Hospital (UCLH)
Part I: Care Act 2014 & paying for care (UK-specific): Sara Wilcox, CEO of ‘Pathways through Dementia’
Part II: Mental Capacity Act & decision-making for loved ones living with AD (finance / health & welfare; UK-specific): Sara Wilcox
Live-in home care options and possibilities for people with AD: Jane Pritchard, Consultant Admiral Nurse, The Good Care Group
Closing Remarks
Eric McDade
Held in July 2016, the international conference gave DIAD families the opportunity to meet face to face and learn about the current state of research.
A Message from DIAD Families
Imagine knowing that you’ll never reach the age of retirement. For generations, our families have been devastated by a rare genetic mutation that causes dominantly inherited Alzheimer’s disease (DIAD). We’re born with a 50% chance of having a gene mutation that leads to nearly a 100% likelihood of developing Alzheimer’s disease in our 30s, 40s or 50s. Our inheritable form of Alzheimer’s has exacted an enormous generational toll on our parents, siblings, our children and other friends and family members who serve as caregivers.
We represent less than 1% of all Alzheimer’s cases, but we are the key to the cure. Because our genetic mutation makes us certain to develop the disease, researchers can use us to identify early warning signs and test preventative drugs that could help the 44 million people affected by Alzheimer’s globally.
In July 2016, DIAD families will convene in Toronto, Canada with researchers, regulators and pharmaceutical companies. We’ll advocate for broader access to experimental treatments, receive updates on the latest advancements in research and learn how we can further contribute to Alzheimer’s research efforts. We’ll also support one another, share experiences and get guidance on every day challenges and decisions our families confront. The 2016 DIAD Family Conference is sponsored by the Alzheimer’s Association and the DIAN-TU.
Presentation videos and pdfs
Introduction
Speakers: Randall Bateman, MD, Washington University School of Medicine, St. Louis, MO and Maria Carrillo, PhD, Alzheimer’s Association
Family presentations
Living with early onset AD
Experience participating in research View pdf »
View from a young family member/ADVOCACY View pdf »
Caregiver Perspective View pdf »
Alzheimer’s overview
State of Alzheimer’s disease research (pdf)
Speaker: Serge Gauthier, CM, MD, FRCPC, McGill University, Quebec, Canada
DIAN Observational Study and DIAN-Trials Unit update
Speaker: Randall Bateman, MD
View pdf »
Global AD ecosystem, advocacy and public policy
Amplifying the voice of those with early onset AD in the context of global activity (pdf)
Speaker: Yves Joanette, PhD, FCAHS, World Dementia Council
View pdf »
Drug development and approval
Joint pharma presentation on advocacy (pdf)
Speaker: Rachel J. Schindler, MD, Pfizer and Johan Luthman, MD, PhD, Eisai
View pdf »
Drug re-purposing for use in AD population (pdf)
Speaker: Barry D. Greenberg, PhD, University Health Network, Toronto
View pdf »
Panel discussion
Speakers:
Health Canada: Maribeth Lazarro, PhD
NIH: Laurie M. Ryan, PhD
FDA: Billy Dunn, MD
Pfizer: Rachel J. Schindler, MD
Eisai: Johan Luthman, MD, PhD
Emerging research topics
Non-pharmacological approaches and modifiable risk factors
Speaker: Carl W. Cotman, PhD, University of California, Irvine
View pdf »
Caregiving and long-term care
Short and long-term options, managing challenges, caring for the caregiver, Q & A (pdf)
Speakers: Sam Fazio, PhD, and Beth Kallmyer, MSW, Alzheimer’s Association
View pdf »
Legal and financial matters
Power of attorney, financial planning, insurance, Q & A (pdf)
Speaker: Judith A Wahl, LLB, Advocacy Centre for the Elderly
View pdf »
Ethical issues in Alzheimer’s disease genetics and biomarker disclosure
Speakers: Jason Karlawish, MD, University of Pennsylvania and Joshua Grill, PhD, University of California, Irvine
View pdf »
2016 DIAD Family Conference Agenda
Welcome/introductions
Randall Bateman, MD – Washington University School of Medicine, St. Louis, MO
Maria Carrillo, PhD – Alzheimer’s Association
Presentations
Family presentation: living with early onset AD
Alzheimer’s overview
State of Alzheimer’s disease research
Serge Gauthier, CM, MD, FRCPC – McGill University, Quebec, Canada
DIAN Observational Study and DIAN-Trials Unit update
Randall Bateman, MD
Q & A
Family presentation: experience participating in research
Family Presentation: View from a young family member/ADVOCACY
Global Ad Ecosystem, Advocacy and Public Policy
Amplifying the voice of those with early onset AD in the context of global activity: Yves Joanette, PhD, FCAHS – World Dementia Council
Q & A
Drug development and approval
Joint Pharma Presentation on Advocacy
Rachel J. Schindler, MD – Pfizer
Johan Luthman, MD, PhD – Eisai
Drug re-purposing for use in AD population
Barry D. Greenberg, PhD – University Health Network, Toronto
Panel discussion
Health Canada: Maribeth Lazarro, PhD
NIH: Laurie M. Ryan, PhD
FDA: Billy Dunn, MD
Pfizer: Rachel J. Schindler, MD
Eisai: Johan Luthman, MD, PhD
Lunch and meet and greet with Alzheimer’s researchers
Emerging research topics
Non-pharmacological approaches and modifiable risk factors
Carl W. Cotman, PhD – University of California, Irvine
Q & A
Family presentation: caregiver perspective
Caregiving and Long-Term Care
Sam Fazio, PhD, and Beth Kallmyer, MSW – Alzheimer’s Association
Short and long-term options
Managing challenges
Caring for the caregiver
Q & A
Legal and financial matters
Judith A Wahl, LLB – Advocacy Centre for the Elderly
Power of attorney
Financial planning
Insurance
Q & A
Ethical issues in Alzheimer’s diseases genetics and biomarker disclosure
Jason Karlawish, MD – University of Pennsylvania
Joshua Grill, PhD – University of California, Irvine
Q & A
Support sessions
Symptomatic family members
With family members present
Symptomatic individuals only
Asymptomatic, at-risk family members (2 groups)
Supporting family/friends
Of symptomatic individuals
Of asymptomatic individuals
Held July 18, 2015,the international conference gave DIAD families the opportunity to meet face to face and learn about the current state of research.
Presentation videos
Genetic counseling
Review pre-symptomatic testing and other considerations
Speaker: Meagan Cochran, MS, CGC
Public policy engagement on issues facing those with Younger-Onset Alzheimer’s Disease (YOAD)
Speaker: Robert Kramer, MPA
Legal and financial matters
Power of attorney, financial planning, long term care
Speaker: Sheri R. Abrams, ESQ
State of Alzheimer’s disease research – panel discussion
Speakers:
Jeffrey Cummings, MD
DIAN Update – John Morris, MD
DIAN-TU Update – Randall Bateman, MD
NIH Funding and Data Sharing – Neil Buckholtz, PhD
Research panel discussion continued: NIH funding and data sharing
Speaker: Neil Buckholtz, PhD
Drug approval process and access — panel discussion
Food and Drug Administration – Janet Woodcock, MD
European Medicines Agency – Maria Isaac, MD
Eli Lilly – Eric Siemers, MD
F. Hoffmann-LaRoche – Robert Lasser, MD, MBA
2015 ADAD Family Conference Agenda
Sponsored by the Dominantly Inherited Alzheimer’s Network-Trials Unit (DIAN-TU) and the Alzheimer’s Association
July 18, 2015
Welcome/Introductions
Presentations/Q/A
Genetic Counseling – Meagan Cochran, MS, CGC
Review pre-symptomatic testing and other considerations
Public Policy Engagement on issues facing those with Younger Onset Alzheimer’s Disease (YOAD) – Robert Kramer, MPA
Legal/Financial Matters – Sheri R. Abrams, ESQ
Power of attorney, financial planning, long term care
Concurrent Sessions
Support for symptomatic family members
Support for asymptomatic, at-risk family member
Support for family
Lunch
Introductory Remarks – Randall Bateman, MD
Family Presentations
Research Presentations
Panel Discussions:
State of Alzheimer’s Disease Research – Jeffrey Cummings, MD
DIAN Update – John Morris, MD
DIAN-TU Update – Randall Bateman, MD
NIH Funding and Data Sharing – Neil Buckholtz, PhD
Drug Approval Process and Access
Food and Drug Administration – Janet Woodcock, MD
European Medicines Agency – Maria Isaac, MD
Eli Lilly – Eric Siemers, MD
F. Hoffmann-LaRoche – Robert Lasser, MD, MBA
Closing Remarks
Program Director
Randall J. Bateman, MD is the Charles F. and Joanne Knight Distinguished Professor of Neurology at Washington University School of Medicine. His research focuses on the causes, and future diagnosis and treatments of Alzheimer’s disease. He has been recognized with awards from the Alzheimer’s Association, Scientific American, the Glenn Award for Aging Research, and the MetLife Medical Research and Promising Investigator Award.
Mailing Address
Washington University, School of Medicine
DIAN-Trials Unit
660 S. Euclid Ave., Campus Box 8111
St. Louis, MO 63110