Friday, March 24th



6:30-7:00pm ET 

Opening Ceremony 

7:15-8:15pm ET 

Saturday, March 25th


General Session

Specialty Workshop

Self-Advocate Workshop

9:00-9:45am ET 

Visit Sponsor and Exhibitor Gallery

10:00-11:15am ET

Updates on Federal Legislation and Opportunities for Advocacy

Anna Fedewa, Manager of Public Policy, National Down Syndrome Society

Neurological and Neurodevelopmental Manifestations in Down Syndrome

Nicole Baumer, MD, MEd, Director, Boston Children’s Hospital Down Syndrome Program; Meghan E. O’Neill, MD FAAP, Director of the Lurie Children’s Down Syndrome Clinic

Empowering Individuals with DS-ASD and Their Families

Teresa Unnerstall, DS-ASD Consultant and Author

Experience United Dance!

Boris Richir, Founder & Director, United Dance

11:45am-1:00pm ET

Current State of Alzheimer’s Diagnostics, Treatments, and Therapies: The Latest Developments in DS-AD Research

Richard Fisher, PhD, Chief Scientific Officer, LuMInd IDSC; Juan Fortea, MD, PhD, Memory Unit Director, Hospital of Sant Pau; Hampus Hillerstrom, President & CEO, LuMind IDSC Foundation

Behavior News You Can Use

Stacy Taylor, EdD, BCBA-D, President/Clinical Director, Advance Behavior & Learning

Amplifying the Voices of Diverse Maternal Experiences

Jessica Avila, MSW, LICSW, Diversity Outreach Coordinator, Massachusetts Down Syndrome Congress, Founder, Rt 3:21 Wellness; Patria Espinal, MDSC Mom; Marline Gordon, MDSC Mom; Tatiana Salinas, Bilingual (Spanish) Community Outreach Specialist, Massachusetts Down Syndrome Congress; Rachel Wilkins-Thurman, MDSC Mom

Advocating for Health While Navigating Disability, Race, and Class

Anna Fedewa, Manager of Public Policy, National Down Syndrome Society; Courtney Gaines, Model, Actress, Self Advocate; DeAnna Gaines, MEd in Special Education, National Down Syndrome Society 4th Congressional District Ambassador, Board of Directors, Down Syndrome Association of Central Oklahoma, Advocate for Minorities with Disabilities, Special Educator, Oklahoma City Public Schools; Kayla McKeon, Manager of Grassroots Advocacy, National Down Syndrome Society

1:30-2:45pm ET

Diversity and Inclusion in Down Syndrome Research: NIH and the INCLUDE Project

Sujata Bardhan, PhD, Health Scientist Administrator, DS-Connect® Registry Coordinator; Linda Garcia, Communications & Outreach Coordinator, INCLUDE and DS-Connect, DS Registry; Dana Sciullo, MOT, OTR/L, Research Associate, National Down Syndrome Society; Charlotte Woodward, Community Outreach Associate, National Down Syndrome Society

The Clinical and Educational Utility of Neuropsychological Evaluations for Children with Down Syndrome

Casey L. Evans, PhD, Clinical Neuropsychologist, Massachusetts General Hospital, Psychology Assessment Center; Julie Grieco, PsyD, ABPP-CN, Board Certified Clinical Neuropsychologist, Massachusetts General Hospital, Instructor, Harvard Medical School; Gretchen Timmel, MEd, Licensed Educational Psychologist and Certified Teacher, Massachusetts General Hospital Down Syndrome Program 

Cooking with Cole!

Cole LaMarca, Self-Advocate & Aspiring Chef

3:15-4:30pm ET

Understanding Research Participation: Why, How, and When Families Should Consider Participating in Down Syndrome Research

Carol Cronin, B2B Sales/Donations/Mama Bear, John’s Crazy Socks; Hampus Hillerstrom, President & CEO, LuMind IDSC Foundation; Michelle Slape, Director of Community Programs and Engagement, LuMind IDSC

The Ache of Your Absence: Creating Communities of Belonging

Erik Carter, PhD, Professor, Baylor University

Crafting Slam Style Stories

Bethany Van Delft Moffi – Comedian, Storyteller, Parent Advocate

Mindful Mediative Art

Melissa Oddi-Morrison BFA, MAE

Sunday, March 26th



Self-Advocate Workshop

10:00-11:15am ET

New Therapies for Proven Ideas: Repurposing Existing Drugs to Treat Conditions Common in Down Syndrome

Alberto Costa, MD, PhD, Clinical Professor/Psychiatry, Case Western Reserve University; Hampus Hillerstrom, President & CEO, LuMind IDSC Foundation; Nelly Pitteloud, MD, Professor of Medicine, Chief, Endocrinology, Diabetes, & Metabolism Service, Centre Hospitalier Universitaire Vaudois (CHUV); Vincent Prevot PhD, Inserm Research Director

Supporting Speech and Language Development in Children with Down Syndrome Using Multiple Modalities

Mia Grossman, MS, CCC-SLP, CLC, Boston Children’s Hospital; Abbie King M.S. CCC-SLP/ATP, Augmentative Communication Program, Boston Children’s Hospital

Inclusion and Friendship!

Lisa Drennan | Founder, MERGE Inclusion Consulting

11:45am-1:00pm ET

Aging and Down Syndrome: Addressing Current and Future Challenges of Aging, and What to Do About It

Rachel Grimm, Manager of Health Programs, Aging & Caregiving, National Down Syndrome Society; Julie A. Moran, DO, Attending Physician, Tewksbury Hospital, Physician Consultant, Massachusetts Department of Developmental Services, Clinical Instructor of Medicine, Harvard Medical School

Building IEPs for the Real World

Catherine Whitcher, MEd, Founder of the Master IEP Coach® Mentorship and Network

Let’s Talk About Independence!

Ben Majewski, MDSC Self Advocate Advisory Council Member, Self-Advocate Resource Specialist, Massachusetts General Hospital Down Syndrome Program; Stephanie Santoro, MD, Assistant Professor, Harvard Medical School Clinical Geneticist, MassGeneral Hospital, Director of Quality Improvement Research, MassGeneral Hospital Down Syndrome Program

1:30-2:45pm ET

What Your Other Children Without Down Syndrome are Thinking: Sibling Issues for Parents

Sue Levine, MA, CSW, Social Worker/ Administrator, Family Resource Associates, Inc.; Brian Skotko, MD, MPP, Emma Campbell Endowed Chair on Down Syndrome, Massachusetts General Hospital & Associate Professor, Harvard Medical School

Moving Out: Turning Residential Options Into Reality

Dafna Krouk-Gordon, Founder and CEO Toward Independent Living and Learning, Inc. (TILL)

The Improvaneer Method Presents an Improva-tastic Self-Advocate Workshop!

Blake Peacock, Self-Advocate, Improvaneer; De’Vonte Perry, Certified Improvaneer Method Live/Online Director

3:15-4:30pm ET

Musculoskeletal Health for Individuals with Down Syndrome

Louis J. DeCaro, DPM, FACFAP; James Kryzanski, MD, Associate Professor of Neurosurgery, Tufts Medical Center; Errol Mortimer, MD, Assistant Professor, Pediatric Orthopedic Surgeon, UMass Memorial Health

Financial Tips and Strategies to Plan a Great Life

Alexandria Dunn, CFP, Special Needs Financial Planning Practice of Affinia Financial Group; John Nadworny, CFP, Special Needs Financial Planning Practice of Affinia Financial Group

Dance Party with DJ Dan’o!

Dan McLean, DJ Dan’o Entertainment