Resources for families of children with Down syndrome during the coronavirus pandemic
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Adult Conference

Self Advocate Session  

In April 2018, the MDSC hosted the 2nd Growing Up with Down Syndrome: Living a Longer, Healthier and More Meaningful Life conference geared specifically for adults with Down syndrome, their loved ones and providers. The event, organized in collaboration with the Mass General Hospital Down Syndrome Program, took place at Bentley University.

The conference represents a significant step in the MDSC’s commitment to strategically address the needs of all our families throughout the lifespan.

The conference included a full day of programming for self-advocates including networking and saving & spending activities led by our partners at the Boston office of PricewaterhouseCoopers (PwC) and a variety of workshops led by members of the MDSC Self Advocate Advisory Council.

For parents, adult siblings, and others within the support network of our loved ones with Down syndrome, the day included a keynote and breakout session delivered by Dr. Dennis McGuire, a Down syndrome behavioral expert with more than 30 years of experience in the fields of mental health and developmental disabilities. He is the former Director of Psychosocial Services for the Adult Down Syndrome Center of Lutheran General Hospital in suburban Chicago, the largest clinic for adults with Down syndrome in the United States. He helped establish the center, which serves over 4,000 unique adult patients with Down syndrome each year. Dr. McGuire keynotes at events around the world and is the co-author of two prominent books about promoting wellbeing in adults with Down syndrome:

Other workshops included:

  • "Something's Different": A Comprehensive Approach to Assessing Memory Concerns in an Adult with Down Syndrome  - Julie A. Moran, DO. Consultant physician, Tewksbury Hospital & Massachusetts Department of Developmental Services; Clinical Lecturer in Medicine, Harvard Medical School
  • A Team to Carry On: Planning for the Future - Alexandria Nadworny, CFP, Wealth Advisory, Supporting Healthy Relationships of Persons with Intellectual and Developmental Disabilities Patricia A. Carney, M.Ed., Ph.D. (candidate); MA DDS Training Specialist; Adjunct Professor/University Without Walls, UMass Amherst
  • Supporting Healthy Relationships of Persons with Intellectual and Developmental Disabilities - Patricia A. Carney, M.Ed., Ph.D. (candidate); MA DDS Training Specialist; Adjust Professor/University Without Walls, UMass Amherst 
  • Substance use among people with developmental disabilities: A guide for friends and family - Marc L. Copersino, Ph.D., ABPP-CP, Assistant Professor of Psychology, Harvard Medical School, and Associate Psychologist, McLean Hospital; Elspeth M. Slayter, Professor, Salem State University School of Social Work
  • DDS Residential Opportunities and Quality Oversight Systems - Victor Hernandez; Ed.M.; Deputy Asst. Commissioner, DDS
  • Medications and Problematic Behaviors and Psychiatric Illness in Down Syndrome - Michelle L Palumbo, MD, Assistant in Pediatrics, Lurie Center/Massachusetts General Hospital for Children, Consulting Psychiatrist, MGH Down syndrome program, Instructor in Pediatrics, Harvard Medical School
  • Building Resiliency for Transition-Age Youth and for Adults with Down Syndrome During Times of Transition, Grief and Loss - Melissa Levin, MSW, LICSW, Newton Public Schools; Tali Rojem, MSW, LICSW, The Edinburg Center 

It was wonderufl to see so many of our longtime families coming together to learn about issues related directly to adults with Down syndrome and to celebrate these incredible members our community! 

Maureen Gallagher and Carey Daly

Hampus Hillerstrom of LuMind

Audience at Bentley