Saturday, March 27th

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

Keeping Children and Adolescents with Down Syndrome Healthy: All the Medical Updates that Parents Need to Know

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

Tapping Into Creativity

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

Stronger Together Siblings: A Workshop for Brothers and Sisters (ages 8-18) of Individuals who have Down Syndrome

Sam Stark, LICSW; Marina Simons M.A, CCC-SLP

Sunday, March 28th

Time

GENERAL SESSION WORKSHOP

SPECIALTY WORKSHOP

Self-Advocate Workshop

11:30am-12:45pm EST

Congress and the Health Research Agenda

Ashley Helsing, Director of Government Relations, National Down Syndrome Society; Charlotte Woodward, Community Outreach Associate, National Down Syndrome Society; Susannah Savage, Health Policy Advisor, Office of Senator Elizabeth Warren; Mariana T. Osorio-Ramirez, Senior Legislative Assistant, Congressman Stephen F. Lynch (MA-8); Elizabeth O’Hara, Lead Health Staffer, Congressman Richard Neal

Music and Movement

Kathlynn C. Sell, MT-BC

Unified Fitness Session

Brendan Aylward, Owner, Unified Health and Performance; Nick Giovinazzo, Best Buddies Ambassador

1:00-2:15pm EST

Mental Health Causes for Behavior Change during a Pandemic in Adolescents and Adults with Down Syndrome

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

Connecting Families to Research that INCLUDEs Them: Advancing Down Syndrome Research at the National Institutes of Health (NIH)

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

Crafting Slam Style Stories

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

Dance Party with DJ Dan’o!

Dan McLean, DJ Dan’o Entertainment