2025 Hunter Syndrome Community Conference

March 8, 2025

Hunter Syndrome Community Conference

March 8, 2025

Hunter Syndrome Community Conference

Please join us for our annual virtual conference, the Hunter Syndrome Community Conference. Enjoy great sessions while networking with your peers from all around the world.
Register

Hunter Syndrome Community Conference 2025

Join us for the 5th annual Hunter Syndrome Community Conference, a gathering dedicated to education, support, and connection for individuals and families affected by Hunter syndrome. This inspiring event features informative presentations from leading experts, healthcare professionals, and advocates in the Hunter syndrome community. Gain valuable insights into the latest research, treatments, and resources while connecting with others who share similar experiences. Whether you are a patient, caregiver, researcher, or supporter, this conference offers a meaningful opportunity to learn, share, and build a stronger community.

Don't miss this chance to come together, exchange knowledge, and find support in the journey with Hunter syndrome!

REGISTER

 

Speakers

Kristin McKay Executive Director Project Alive
Kristin McKay
President and Executive Director, Project Alive
Barbara Burton, MD
Barbara Burton, MD
Attending Physician, Genetics, Genomics and Metabolism, Lurie's Children's Hospital, Professor of Pediatrics (Genetics, Genomics and Metabolism), Northwestern University Feinberg School of Medicine
Kim Stephens, PhD
Kim Stephens, PhD
Executive Director, Muenzer MPS Research & Treatment Center
Leigh Anne H. Weisenfeld, MSW, LCSW
Leigh Anne H. Weisenfeld, MSW, LCSW
Clinical Instructor, Muenzer MPS Research & Treatment Center
Raymond Wang, MD
Raymond Wang, MD
Director of the Multidisciplinary Lysosomal Storage Disorder Program at CHOC. Board certified clinical geneticist and biochemical genetics specialist.
Katey Hoffman, MD
Katey Hoffman, MD
Pediatric Hospitalist, MPS II Mother
Kyle Underwood, MHA
Kyle Underwood, MHA
Chairperson of the Board, Project Alive
Joseph Muenzer Project Alive
Joseph Muenzer, MD, PhD
Bryson Distinguished Professor of Pediatrics, Pediatric Geneticist and Researcher, Director of Muenzer MPS Research & Treatment Center
Schedule
March 08
7:00 AM - 8:00 AM PST
MPS II 101
8:00 AM - 8:10 AM PST
Welcome
8:15 AM - 9:00 AM PST
Neurocognitive Testing
9:00 AM - 10:00 AM PST
Blood Brain Barrier Challenges
10:00 AM - 11:00 AM PST
MPS II Biomarkers
11:00 AM - 12:00 PM PST
Gene Therapy in Hunter Syndrome
12:00 PM - 12:30 PM PST
Break
12:30 PM - 1:30 PM PST
Clinical Trials 101
1:30 PM - 2:30 PM PST
Caregiver Panel: Treatment Tips & Tricks
2:30 PM - 3:30 PM PST
MPS II Advocacy Landscape
3:30 PM - 3:30 PM PST
Closing & Networking
Our Sponsors
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