2024 Hunter Syndrome Community Conference
Booths will be open all day to visit and get information from exhibitors.
Hunter Syndrome 101 (Parents & Providers)
Join us to learn more about Hunter syndrome, what to expect after diagnosis, and a breakdown of terms. Ask any questions you may have during this time. This session is designed to further the understanding of caregivers, friends, family, providers, teachers, therapists, and all others looking to learn more about Hunter syndrome.
Therapy for Neurodegenerative Disorders (Parents & Providers)
Lauren Newhouse, OTD, OTR/L, SWC will share her experience as a pediatric occupational therapist working with children with neurogenerative disorders to guide participants through the nuances of best therapeutic practice for children with chronic and progressive conditions. Topics will include establishing the optimal therapeutic relationship between therapist and child/family, collaborating on goal setting, and setting meaningful milestones while considering requirements set by various funding sources (insurance, school district, etc.). Community-based therapeutic alternatives to support children’s unique needs will also be discussed. Family, caregivers, and providers are all welcome to attend.
The ABC's of Inclusive Practices (Parents & Providers)
Learn how to bring inclusive practices into the classroom, your neighborhood, and the clinic. Kayla will discuss adaptations that can make any environment inclusive to all.
Accommodating Behaviors in the Classroom & Clinic (Providers)
Workshop session for teachers, therapists, and other providers. Learn how to better accommodate the child you serve living with MPS II.
Grab a bite to eat, stretch, or check out one of our networking rooms!
Join us for lots of fun activities and giveaways! All kids and teens welcome to join. Agenda: 1:30-1:45 pm: Giveaways! 1:45-2:15 pm: Kids Yoga/Movement 2:15-2:45 pm: Coloring & Art 2:45-3:15 pm: Story Time 3:15-3:45 pm: Bingo 3:45-4:15 pm: Scavenger Hunt 4:15-4:30 pm: Giveaways!
Bereaved Parents and Anticipatory Grief Breakout Rooms
Join us in breakout rooms to continue the discussion from Courageous Parents Network's session.
UNC MPS Center Update
Learn about the offerings of the new Joseph Muenzer MPS Research and Treatment Center located at UNC, Chapel Hill.
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