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Event Recap: 2024 Hunter Syndrome Community Conference

In March of 2024, Project Alive held the fourth annual Hunter Syndrome Community Conference. This year’s conference brought new speakers and topics in which the community has shown interest. The yearly virtual conference continues to address the needs of the Hunter syndrome community.

As with previous conferences, representatives from industry were brought in to discuss the latest science and updates on current clinical trials. Takeda, Denali, JCR, and RegenxBio presented their updates for the community to keep everyone informed on progress and findings. This year added two latest updates from UCSF and Genetic Counselor Billie Lianoglou, discussing their clinical trial for in utero enzyme replacement therapy for lysosomal storage diseases, and the University of Manchester’s Dr. Simon Jones who discussed the HSC gene therapy trial in England.

Those attending who wanted to learn more about Hunter syndrome got an in-depth presentation from Board-certified Pediatrician Katey Hoffman with the Hunter Syndrome 101discussion at the start of the conference. After joining us for the inaugural Family Fair in 2023, Senior Clinician Lauren Newhouse of Children’s Hospital of Orange County gave a highly informative presentation on Therapy for Neurodegenerative Disorders. New this year were a presentation on inclusion from Kayla Coburn and information on SSI benefits from Tom Weir.

Returning this year to share support services from Courageous Parents Network was Jennifer Seidman who also held discussion groups to answer questions and give guidance and Julie Eisengart who discussed behavior and how to accommodate within a classroom setting. Billie Lianoglou held additional sessions discussing fertility, IVF, and family planning. This year’s conference covered many areas of life for the community.

This year’s conference was special as we had Nathan Grant presenting information on the first research grant project that Project Alive granted in 2023. He continues to work on researching how to make the transition from pediatric to adult healthcare by talking with the Hunter syndrome community. Additionally, we had Dr. Kim Stephens provide an update on the progress of the UNC Muenzer MPS Center.

Our conferences are never complete without a little fun! In continuing tradition, we held Bingo games where participants won prizes and this year, we featured a kid’s room where there were crafts, music, yoga, and books to keep those kiddos entertained. This was another successful year for HSCC, and we look forward to many more. Please visit our Resources to catch some of the recordings from this year.


October 26, 2024

WonderFall Family Festival

Project Alive and The Hunter Syndrome Foundation are teaming up to host the WonderFall Family Festival on October 26, 2024 at the Rough Rider's Stadium in Frisco, TX! This fall festival will be an inclusive, family friendly event to raise awareness about Hunter syndrome and support the work being done in research, advocacy, and community support by Project Alive.