Down Syndrome Clinic Conference

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Healthy transitions to adulthood - Spring 2021

This conference is designed for families with transition-aged youth ages 14-21 (but anyone is welcome) who are preparing to enter the world of adult health care. The speakers below will share cutting- edge resources, research, and information for families who have loved ones with Down syndrome. This year the conference is free but you must register.

Conference registration

8:30 AM – Welcome and Introductions

Terri Couwenhoven MS Clinic Coordinator – Children's Wisconsin Down Syndrome Clinic

8:45 AM Child and Family Influences on Weight Management

Workshop Description- Weight management can be a common concern for individuals with Down syndrome, but there is limited research on nutrition, exercise, metabolism, and weight management specific to individuals with Down syndrome and other disabilities. In this workshop, preliminary findings from research related to factors that can influence weight management in individuals with Down syndrome, with a focus on how the family environment may influence individuals' eating habits and weight status will be discussed.

Michelle Polfuss PhD, RN, CPNP-AC/PC Dr. Polfuss is Associate Professor for the University of Wisconsin-Milwaukee College of Nursing and Joint Research Chair in the Nursing of Children. Her research has focused on pediatric obesity and its related co morbidities with a special interest in the role of the family through parenting and feeding behaviors and obesity within the special needs population. She is a certified pediatric nurse practitioner both in acute and primary care. Her clinical experience includes working in within sub-specialties of obesity, endocrinology, and cardiology.

Co-Presenter- Emma Marston, RN, BSN, CLC. Emma is a PhD student in Nursing at the University of Wisconsin – Milwaukee. Her research interests include health promotion for individuals with disabilities and their families. Emma was a graduate student trainee for the Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities (WI – LEND) program for the 2019-2020 academic year, a federally funded leadership training program centered on interdisciplinary systems of care related to individuals with disabilities and their families.

10:00 AM Adult Healthcare Guidelines for People with Down syndrome

Workshop Description- Although health management guidelines for adults with Down syndrome have existed since 1999, these initial guidelines were based on consensus from physician experts in the field. More recently, the Global Down Syndrome Healthcare Guidelines project in conjunction with the Down Syndrome Interest Group-USA (DSMIG-USA) have created soon- to- be-published, evidence-based, consensus guidelines for providing care to adults with Down syndrome. Dr. Chicoine will share these updated guidelines, improve our understanding of co-occurring conditions in adults with Down syndrome and address questions about the efficacy, risks and benefits of screening asymptomatic adults with Down syndrome for conditions that are more, less or of equal prevalence as those without Down syndrome.

Brian Chicoine, MD. is the co-founder and Medical Director of the Advocate Medical Group Adult Down Syndrome Center in Park Ridge, Illinois. The Center has served over 6000 adolescents and adults with Down syndrome since its inception in 1992. Dr. Chicoine graduated from Loyola University of Chicago Stritch School of Medicine. He completed his Family Medicine residency at Lutheran General Hospital where he is now a faculty member. He has published several articles regarding health of people with Down syndrome and co-authored two books Mental Wellness in Adults with Down Syndrome and The Guide to Good Health for Teens and Adults with Down Syndrome published by Woodbine House Publishing.

11:00 AM Everything you wanted to know about DSC2U- A virtual health & wellness resource for people with Down syndrome

Workshop Description- Very few families who have loved ones with Down syndrome live in an area where they can visit a Down syndrome specialty program like the Down syndrome clinic at Children' Wisconsin. Even fewer of these clinics exist for adults who have Down syndrome and it is common for most primary care physicians to have only one or two patients with Down syndrome in their practice. Learn how Down Syndrome Clinic to You (DSC2U) can be used as a tool for bringing the best of health and wellness information specific to Down syndrome to caregivers and primary care physicians no matter where you live.

Brian Skotko, MD, MPP A board-certified medical geneticist, Dr. Skotko is the Emma Campbell Endowed Chair on Down Syndrome at Massachusetts General Hospital. As the Director of the hospital's Down Syndrome Program, he has dedicated his career towards children with cognitive and development disabilities. He co-authored the national award-winning books, Common Threads: Celebrating Life with Down Syndrome and Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He is a graduate of Duke University, Harvard Medical School, and Harvard Kennedy School, and he is currently an Associate Professor at Harvard Medical School. America.” Dr. Skotko has a sister with Down syndrome and serves on the Honorary Board of Directors for the Massachusetts Down Syndrome Congress.