Time
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
Boris Richir, Founder & Director, United Dance
11:45am-1:00pm ET
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
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
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
For Siblings, By Siblings: A Workshop for Brothers and Sisters of Individuals with Down Syndrome
Marina Simons-Fulton MA, CCC-SLP; Sam Stark, LICSW
Cole LaMarca, Self-Advocate & Aspiring Chef
3:15-4:30pm ET
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
Bethany Van Delft Moffi – Comedian, Storyteller, Parent Advocate
Melissa Oddi-Morrison BFA, MAE
Time
GENERAL SESSION
Self-Advocate Workshop
10:00-11:15am ET
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
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
Dan McLean, DJ Dan’o Entertainment