Event Recap: 2022 Hunter Syndrome Community Conference
In March of 2022, Project Alive held the second annual Hunter Syndrome Community Conference. Continuing with the original mission of the conference, this year again brought together families and individuals affected by Hunter syndrome with the goal of sharing new information and making connections. With the success of the first year’s conference, new sessions and presentations were added to the agenda.
This year’s conference opened with a panel of experts that included Dr. Burton, Dr. Harmatz and Dr. Muenzer, leading experts in the medical field on Hunter syndrome. Representatives from Denali, Takeda, JCR, Homology, RegenX Bio and Avrobio spoke on current research and clinical trials. There was an increase in offerings this year in workshops and breakout sessions. We heard again from Dr. Julie Eisengart who was joined by Nathan Grant to present their research in the area of behavioral management. Dr. Rowe gave a popular presentation on the challenges of anesthesia and ENT issues with those affected by Hunter syndrome, and Erin Jozwiak discussed the formidable job of navigating medical appointments.
Attendees had the chance to meet with other families in their own space to have direct conversation in a safe environment in the form of breakout rooms. The conference created spaces for parents, grandparents, siblings, and more to meet others so they can talk about their experiences, make new friends, and share their advice. As always, the Hunter Syndrome Community Conference is about the MPS II community and ensures that even though it is a virtual conference, it is still a space where they can find the support, information, and connections they need.