CHOP Representatives Present at National Down Syndrome Conferences

Allison Simms, Mary Pipan, MD, Alyssa Siegel, MD, Helen Milligan, PT, MPT, and Kim Anderson, MS, OTR/L at the DSMIG USA Symposium. In July 2016, representatives from the Trisomy 21 Program at the Children’s Hospital of Philadelphia participated in two international Down syndrome events in Florida.

DSMIG-USA® Symposium

First up, the professionals! The Down Syndrome Medical Interest Group – USA (DSMIG-USA®) Annual Symposium provides a forum for sharing knowledge and experiences related to the care of children and adults with Down syndrome, clinical research, and development of Down syndrome clinics.

Participants include physicians, research scientists, nurses/nurse practitioners, clinic coordinators, psychologists, dietitians, occupational and physical therapists, speech-language pathologists, social workers and more.

Mary Pipan, MD, director of CHOP’s Trisomy 21 Program, presented an update on healthcare guidelines and Down syndrome growth charts alongside Marilyn Bull, MD, FAAP, a member of the National Institutes of Health Down Syndrome Registry Governance Board.

NDSC Convention

Each year, thousands of people from across the globe attend the National Down Syndrome Congress (NDSC) Annual Convention to hear the latest information from world-renowned Down syndrome experts and connect with others in the NDSC family.

The convention is designed to educate parents, other family members and caregivers, as well as medical and education professionals, with a mix of large sessions with keynote speakers, and more than 60 breakout workshops.

CHOP team members presented at several workshop sessions, including:

You and Your Physician: A True Health Care Team

As the parent of a child with Down syndrome, there is often significant time dedicated to addressing health concerns and interacting with your child’s health care team. Attending Physician Alyssa Siegel, MD, presented a workshop on creating a “partnership” between parent and physician while identifying the concerns, goals, responsibilities, and expectations of each party involved. Using interactive scenarios, the workshop highlighted the challenges and rewards of achieving the best working relationship with healthcare providers, and empowered parents with new tools to affect better outcomes.

Making a Splash with Aquatic Therapy

For the past five years, Occupational Therapist Kim Anderson, MS, OTR/L, and Physical Therapist Helen Milligan, PT, MPT, have been holding aquatic therapy groups for children with Down syndrome between the ages of 1 and 5. In this session, they talked about the goals of the group and the benefits of pool therapy, including how it can improve strength, oral motor skills, social interactions, balance, body awareness, and activities of daily living all while giving children the chance to have fun with other children and caregivers in the pool.

Transition to Adulthood for Youth with DS

In a workshop focused on the transition to adulthood, Allison Simms, NCES, Supported Employment Specialist/Educational Consultant, outlined a comprehensive healthcare-oriented Down syndrome transition clinic for youth from 14 to 22 years old. The program includes both an educational consultant who provides an IEP process review and recommendations, as well as REACH (Rapport, Empowerment, Advocacy through Connections and Health) which provides psycho-educational workshops focused on self-care, self-advocacy, socialization, and parent training. The program included information about CHOP Career Path, an innovative vocational training program that leads to employment for young adults with chronic illness or disabilities.