2024 Hunter Syndrome Community Conference

Join Us

March 23rd

Join Us!

Fourth Annual Virtual Conference

Join us at our 4th annual virtual Hunter Syndrome Community Conference. Look forward to hearing the latest updates in industry and research and 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. *Schedule subject to change.
Register

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.

*Schedule subject to change.

Speakers

Lauren Francis Newhouse, OTD, OTR/L, SWC
Lauren Francis Newhouse, OTD, OTR/L, SWC
Senior Clinician at CHOC Children's Hospital and Adjunct Clinical Professor at CSU Dominquez Hills
Kyrah Jones
Kyrah Jones
Project Alive Board Member
Jenny Robberson
Jenny Robberson
Yoga Instructor at Freckle Face Yoga
Cara Harrington
Cara Harrington
Brand Lead for Takeda's Hunter Syndrome Therapy
Jacqline Gray
Jacqline Gray
Director of Patient Support for Takeda's LSD and Endo Patient Services
Julie Eisengart, PhD
Julie Eisengart, PhD
Director of Neurodevelopmental Program in Rare Disease, University of Minnesota
Kayla Coburn Inclusion Starts Now
Kayla Coburn
Inclusion Specialist at Inclusion Starts Now
Dr. Kimberly Stephens, DBA
Dr. Kimberly Stephens, DBA
Executive Director, MPS Research & Treatment Center Department of Pediatrics — Genetics & Metabolism
Jennifer Siedman
Jennifer Siedman
Director of Community Engagement at Courageous Parents Network
Kristin McKay
Kristin McKay
President and Executive Director of Project Alive
Andrew Hoffman
Andrew Hoffman
Chair of Project Alive Board and MPS II Paren
Nathan Grant
Nathan Grant
MPS II Sibling
Schedule
March 23
9:00 AM - 8:00 PM EST
Booth
Booths will be open all day to visit and get information from exhibitors.
10:15 AM - 11:00 AM EST
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.
11:00 AM - 11:15 AM EST
Stage
Opening and Welcoming Remarks
11:15 AM - 12:00 PM EST
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.
12:00 PM - 1:00 PM EST
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.
1:00 PM - 2:00 PM EST
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.
1:00 PM - 1:30 PM EST
Networking
Break
Grab a bite to eat, stretch, or check out one of our networking rooms!
1:30 PM - 4:30 PM EST
Session
Kid's Room
Join us for lots of fun activities and giveaways! All kids and teens welcome to join. Agenda: 1:30-1:45 pm: Giveaways! 1:45-2:15 pm: Kids Yoga/Movement 2:15-2:45 pm: Coloring & Art 2:45-3:15 pm: Story Time 3:15-3:45 pm: Bingo 3:45-4:15 pm: Scavenger Hunt 4:15-4:30 pm: Giveaways!
1:30 PM - 2:10 PM EST
Stage
Industry Updates-Part 1
Takeda, JCR, and REGENXBIO
2:10 PM - 2:45 PM EST
Stage
SSI Ins and Outs
2:45 PM - 3:15 PM EST
Stage
Industry Updates-2
Denali, University of Manchester, and UCSF
3:15 PM - 4:00 PM EST
Stage
Courageous Parents Network
4:00 PM - 4:30 PM EST
Session
Bereaved Parents and Anticipatory Grief Breakout Rooms
Join us in breakout rooms to continue the discussion from Courageous Parents Network's session.
5:00 PM - 5:30 PM EST
Stage
Pediatric to Adult Healthcare Transition
5:30 PM - 6:00 PM EST
Stage
UNC MPS Center Update
Learn about the offerings of the new Joseph Muenzer MPS Research and Treatment Center located at UNC, Chapel Hill.
6:00 PM - 6:30 PM EST
Networking
Dinner Break
6:30 PM - 7:30 PM EST
Stage
Bingo!
7:30 PM - 7:45 PM EST
Stage
Closing Remarks
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