Event Recap: 2021 Hunter Syndrome Community Conference
In March of 2021, Project Alive held the first annual virtual event, Hunter Syndrome Community Conference. The purpose of this conference was to bring together a strong community of support for families and individuals impacted by Hunter syndrome. The conference provided a forum for education, scientific presentations, networking, and research participation. HSCC was a place where meaningful connections were made and the opportunity to learn.
The first annual HSCC highlighted different areas of interest in the Hunter syndrome community. Medical experts spoke on topics covering carpal tunnel syndrome from Dr. Kallianinen, neurocognitive development from Dr. Julie Eisengart and Dr. Elsa Shapiro and a panel discussion that included Dr. Barbara Burton, Dr. Joseph Muenzer, and Dr. Paul Harmatz. Industry representatives such as Denali, Homology and UCSF presented their research and information on clinical trials, exposing those in the community to critical information needed as decisions are made on how to care for their boys.
Adult attenuated panelists Nicholas DiTommaso, Dave Moran and Kyle Underwood discussed what it means to be an adult with MPS II. A needed discussion on self-care and the importance of caregivers taking care of their needs was presented by Cristol Barrett O’loughlin. There were many opportunities to meet other families and participants were treated with entertainment and networking that gave them the feel of being together as a community.