2024 Hunter Syndrome Community Conference
Join Us
March 23rd
Project Alive's annual Hunter Syndrome Community Conference (virtual) will be held on March 23, 2024. Tune in for clinical trial updates, research results, a variety of speakers, and fun family sessions. There is no charge to attend. Family, friends, and other supporters are welcome.
Teachers, therapists, and providers are welcome to attend to enjoy a few special sessions. Invite yours to join!
Connect with other families experiencing similar Hunter syndrome journeys. Enjoy games, and give-aways!
*To use multiple devices in a household, register each household member separately. Only one conference package will be mailed to each household.
Conference program can be downloaded here: Conference Program
Speakers
Kyle Underwood
Project Alive's Vice Chairman of the Board
Mathias Schmidt, PD, PhD
Vice President, Business Development, IR Fields (ex-Japan) and Patient Advocacy of JCR Pharmaceuticals Co., Ltd. President & CEO of JCR USA, Inc. CEO of ArmaGen, Inc.
Billie Lianoglou
Genetic Counselor, UCSF Center for Maternal-Fetal Precision Medicine
Katey Hoffman, M.D.
Pediatrician, Former Project Alive Board Member, Hunter Syndrome Mom
Angela LeDay, PharmD, PhD
Sr. Director of Medical Science Liaisons, Denali Therapeutics
Lauren Francis Newhouse, OTD, OTR/L, SWC
Senior Clinician at CHOC Children's Hospital and Adjunct Clinical Professor at CSU Dominquez Hills
Professor Simon Jones
Consultant in Paediatric Inherited Metabolic Diseases at the Willink Unit in Genomic Medicine, St. Mary's Hospital in Manchester, UK
Sam Cooper
Head of Marketing for Takeda's LSD Franchise
Sairei So, PhD
Associate Director of Clinical Development Department, JCR Pharmaceuticals Co., Ltd
Dr. Laura Pisani
Senior Medical Director in Global Clinical Development at REGENXBIO
Thomas Gregory Wier
MPS II Dad, Representative for the Social Security Administration (Woodstock, IL)
Jenny Robberson
Yoga Instructor at Freckle Face Yoga
Jacqline Gray
Director of Patient Support for Takeda's LSD and Endo Patient Services
Julie Eisengart, PhD
Director of Neurodevelopmental Program in Rare Disease, University of Minnesota
Kayla Coburn
Inclusion Specialist at Inclusion Starts Now
Dr. Kimberly Stephens, DBA
Executive Director, MPS Research & Treatment Center Department of Pediatrics — Genetics & Metabolism
Jennifer Siedman
Director of Community Engagement at Courageous Parents Network
Kristin McKay
President and Executive Director of Project Alive
Andrew Hoffman
Chair of Project Alive Board and MPS II Paren
Nathan Grant
MPS II Sibling
Schedule
March 23
Booth
Booths will be open all day to visit and get information from exhibitors.
Stage
Hunter Syndrome 101 (Parents & Providers)
Join us to learn more about Hunter syndrome, what to expect after diagnosis, and a breakdown of terms. Ask any questions you may have during this time. This session is designed to further the understanding of caregivers, friends, family, providers, teachers, therapists, and all others looking to learn more about Hunter syndrome.
Session
Reproductive Planning Related to Hunter syndrome
Join the UCSF Center for Maternal-Fetal Precision Medicine team to discuss family planning for families affected by Hunter syndrome.
Stage
Therapy for Neurodegenerative Disorders (Parents & Providers)
Lauren Newhouse, OTD, OTR/L, SWC will share her experience as a pediatric occupational therapist working with children with neurogenerative disorders to guide participants through the nuances of best therapeutic practice for children with chronic and progressive conditions. Topics will include establishing the optimal therapeutic relationship between therapist and child/family, collaborating on goal setting, and setting meaningful milestones while considering requirements set by various funding sources (insurance, school district, etc.). Community-based therapeutic alternatives to support children’s unique needs will also be discussed. Family, caregivers, and providers are all welcome to attend.
Stage
The ABC's of Inclusive Practices (Parents & Providers)
Learn how to bring inclusive practices into the classroom, your neighborhood, and the clinic. Kayla will discuss adaptations that can make any environment inclusive to all.
Session
Accommodating Behaviors in the Classroom & Clinic (Providers)
Workshop session for teachers, therapists, and other providers. Learn how to better accommodate the child you serve living with MPS II.
Networking
Break
Grab a bite to eat, stretch, or check out one of our networking rooms!
Session
Kid's Room
Join us for lots of fun activities and giveaways! All kids and teens welcome to join.
Agenda:
1:30-2:00 pm: Bingo,
2:00-2:30 pm: Story Time,
2:30-3:00 pm: Guess the Drawing,
3:00-3:30 pm: Simon Says,
3:30-4:00 pm: Coloring & Art,
4:00 - 4:30 pm: Yoga & Movement,
4:40 - 5:00 pm: Scavenger Hunt
Stage
Takeda Update
Takeda provides an organizational update to the Hunter syndrome community.
Stage
JCR Pharmaceutical: MPS II -Our Journey
Join JCR Pharmaceuticals to hear the most recent data from their JR141 clinical trial.
Stage
RGX-121 Gene Therapy for the Treatment of Severe Mucopolysaccharidosis Type II (MPS II): CAMPSIITE® Phase I/II/III: A Clinical Study Update
REGENXBIO presents data for their RGX-121 clinical trial.
Stage
SSI Ins and Outs
Join MPS II dad and Social Security Administration Representative, Tom Wier, on how to navigate SSI. Tom will explain the process of applying for benefits and answer your questions related to the program.
Stage
DNL310 Clinical Study Update From Denali
Denali Therapeutics presents study updates from the DNL310 clinical trial.
Stage
Prenatal Enzyme Replacement Therapy for Hunter Syndrome
UCSF Center for Maternal-Fetal Precision Medicine Team presents information on their clinical trial for prenatal enzyme replacement therapy.
Stage
St. Mary's Hospital in Manchester, UK: Ex Vivo Stem Cell Gene Therapy for MPS II
Professor Simon Jones shares data on the ex vivo stem cell gene therapy for MPS II clinical trial in Manchester, UK
Stage
Courageous Parents Network: What Do I Say Now?
Hunter syndrome families have to learn how to navigate many forms of grief from the moment of diagnosis. Sometimes answering a question as simple as "how are you" can feel difficult to navigate. Spend this time learning how to address the people in your life while you're navigating grief.
Session
Bereaved Parents and Actively Caring Caregiver Breakout Sessions
Join us in breakout rooms to continue the discussion from Courageous Parents Network's session.
Stage
Pediatric to Adult Healthcare Transition
Nathan Grant presents on the study "Transitioning from Pediatric to Adult Health Care in Lysosomal Diseases: The MPS Experience."
Stage
UNC MPS Center Update
Learn about the offerings of the new Joseph Muenzer MPS Research and Treatment Center located at UNC, Chapel Hill.
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