2023 Hunter Syndrome Conference
Speakers
Schedule
March 11
Stage
Hunter Syndrome 101
Listen to Project Alive’s President and Executive Director, Kim Stephens and Kristin McKay, discuss what MPS II is and what to expect. This presentation is best for newly diagnosed families, educators and those in the medical field who are interested in hearing from parents and long-time advocates.
Session
Opening and Welcome
Opening remarks from the Executive Director and President of Project Alive.
Stage
UNC MPS II Center Update
Latest news on the progress of the MPS II Center at UNC.
Stage
Living with MPS - Adult Journey
(MPS II Adult Panel) Adults living with MPS II discuss their journeys and experiences.
Stage
Tackling the Sadness Along the Way-Teams and Tools to Support You
Courageous Parents Network
Schedule
March 12
Stage
Parents as Advocates
Advocacy is empowerment! Hear about Mark Dant’s continuing journey as he advocates for his son and the Hunter community.
Session
Transplant in MPS II
Presentation about research on transplant in the MPS II population with Q & A
Session
Parent/Caregiver Self-care
Your health and well-being is just as important as your child's.
Session
Advocacy 101
Everylife Foundation workshop: How to make your voice heard!
Session
Kids Learning - Biology of Hunter Syndrome
Basic biology lesson for kids age 4-8 years old.
What is different about my brother's body? Why does my brother need medicine?
Session
Anesthesia/ENT
Hear from experts about the airway concerns they experience with Hunter Syndrome patients.
Session
Overview of MPS II: Head to Toe
An overview of the ways in which Hunter Syndrome affects the entire body.
Session
Moment of Remembrance
Meet in the Remembrance Room under the Sessions tab to share memories and photos.
Stage
Behavioral Management/Speech Therapy
Advice from the experts about how to manage some of the difficult behavioral manifestations of Hunter Syndrome