Time
GENERAL SESSION Workshop
Specialty Workshop
Self-Advocate Workshop
10:00-11:15am EST
Live Launch featuring Keynote Speaker Chris Nikic, Emcee Lauren Falcon, Special Guests, and 2021 Award Ceremony!
11:30am-12:45pm EST
What You Need to Know about COVID-19 and Down Syndrome
Stephanie L. Sherman, PhD, Professor Emerita, Emory University; Kishore Vellody, M.D., Professor of Pediatrics, University of Pittsburgh School of Medicine, Children’s Hospital of Pittsburgh, Paul C. Gaffney Division of Pediatric Hospital Medicine, Medical Director, Down Syndrome Center of Western PA; Nicole Baumer, MD, MEd, Neurodevelopmental Disabilities, Director, Boston Children’s Hospital Down Syndrome Program; Stephanie Santoro, MD, Assistant Professor of Pediatrics, Harvard Medical School, Clinical Geneticist, MassGeneral Hospital, Director of Quality Improvement Research, MassGeneral Hospital Down Syndrome Program; James Hendrix, Ph.D., Chief Scientific Officer, LuMind IDSC Foundation
N/A
1% Better: A Chat with Chris Nikic on Reaching Your Full Potential
Chris Nikic, Ironman 140.6, Special Olympics Ambassador, Public Speaker, High School Graduate
1:00-2:15pm EST
Brian Skotko, MD, MPP, Emma Campbell Endowed Chair on Down Syndrome & Director of the Down Syndrome Program at Massachusetts General Hospital
Care for the Givers: A Gentle and Restorative Yoga Offering
Marlene Boyette, Registered Trauma Informed Yoga & Meditation Facilitator/Wellness Facilitator
Spending, Saving and Personal Innovations
PricewaterhouseCoopers (PwC) team
2:30-3:45pm EST
Behavioral Therapy For Children with Down Syndrome: Advocacy and Research Updates
Nicole Baumer, MD, MEd, Neurodevelopmental Disabilities, Director, Boston Children’s Hospital Down Syndrome Program; Linnea Joffe-Nelson, MA, JASPER Interventionist, Nurse Practitioner Student
New Parents: Sharing Our Stories
Sarah Cullen, Family Support Director, MDSC; Emily Jean Davidson, MD, MPH, RYT, Boston Children’s Hospital; Angela Lombardo, Program Coordinator, Down Syndrome Program at Boston Children’s Hospital; Erich Blankenburg, MDSC Parent
Kayla Snover, Artist
4:00-5:15pm EST
The Evolving Landscape of Down Syndrome Associated Alzheimer’s Disease
James Hendrix, Ph.D., Chief Scientific Officer, LuMind IDSC Foundation
Grandparents: Share and Connect
Sue Laing, Co-Leader of MDSC Grandparents Support Group
Sam Stark, LICSW; Marina Simons M.A, CCC-SLP
Time
GENERAL SESSION WORKSHOP
SPECIALTY WORKSHOP
Self-Advocate Workshop
Congress and the Health Research Agenda
Vince Randazzo, Public Policy Advisor, National Down Syndrome Society; Charlotte Woodward, Community Outreach Associate, National Down Syndrome Society; Ashley Helsing, Director of Government Relations, National Down Syndrome Society
Kathlynn C. Sell, MT-BC
Brendan Aylward, Owner, Unified Health and Performance; Nick Giovinazzo, Best Buddies Ambassador
1:00-2:15pm EST
Brian Chicoine, MD, Medical Director, Advocate Medical Group Adult Down Syndrome Center; Family Medicine Faculty at Advocate Lutheran General Hospital; Katie Frank, PhD, OTR/L, Occupational Therapist III, Advocate Medical Group Adult Down Syndrome Center
Breastfeeding Babies with Down Syndrome: Facilitating Positive Outcomes
Jill Rabin M.S.CCC-SLP/L IBCLC Pediatric Speech Pathologist/International Board Certified Lactation Consultant; Rachel Murphy, RN, CLC; Ella Gray Cullen, RN, CLC
D.A.D.S. (Dads Appreciating Down Syndrome) – Sharing and Connecting
Jeff Roback, President and Founder of Dads Appreciating Down Syndrome (D.A.D.S.) of Massachusetts, an Affiliate of MDSC; Luis Castillo, MDSC Dad; Robby Ketchell, MDSC Dad; Ray Glowner, Active Member of D.A.D.S. of Down Syndrome Indiana
Healthy Communication: Managing Stress and Tips to Stay Calm
Jeanine Woods, IMPACT:Ability Program Coordinator
2:30-3:45pm EST
Sujata Bardhan, Ph.D., Health Scientist Administrator, DS-Connect Registry Coordinator, Intellectual & Developmental Disabilities Branch, Eunice Kennedy Shriver NICHD, National Institutes of Health; Melissa Parisi, MD, PhD, Chief of the Intellectual & Developmental Disabilities Branch, Eunice Kennedy Shriver NICHD, National Institutes of Health; James Hendrix, Ph.D., Chief Scientific Officer, LuMind IDSC Foundation; Vince Randazzo, Public Policy Advisor, National Down Syndrome Society
Bethany Van Delft Moffi, Comedian, Host/Storyteller for The Moth, Parent Advocate
Creative Writing with Jillian and Kate
Jillian Berube; Kate Bartlett
4:00-5:15pm EST
Translating Down Syndrome Neuroscience Research
Diane Chan, MD PhD, Post-doctoral Fellow/ Tsai Lab, MIT; Hiruy Meharena, PhD, Post-Doctoral Fellow, MIT; Brennan Jackson, PhD Candidate
Dan McLean, DJ Dan’o Entertainment