2023 Hunter Syndrome Family Fair
Join Us!
Saturday, October 28, 2023
Project Alive's Hunter Syndrome Family Fair is all about the MPS II community! This event is free for all MPS II community members. Physicians, therapists, educators, genetic counselors, and other professionals working within the MPS II space are welcome to attend.
What is happening at this event?
- Speaker sessions focused on everyday life of MPS II
- Hear from pharma companies with MPS II clinical trials and have the opportunity to ask in depth questions in the expo
- Special speaker track for physicians, therapists, educators, etc.
- Fun games and prizes for kids
- Trick or treating on the patio
- Lunch will be provided
- There will be a Casino Night event in the evening. Please click the link below to purchase a VIP ticket using promo code MPSFamily. MPS II families will receive free childcare during this portion of the event. Kids will have a fun time with many activities at the kids camp with trained professionals. You will receive an email at a later date to sign up for childcare.
Register for Casino Night here
Room Blocks:
Use the following link to book your hotel room at a discounted rate.
Scholarships:
There are a limited number of scholarships available. Scholarships will provide entry into the family fair, free VIP entry into casino night, free two night hotel stay, and up to $1,500 in travel stipends. Click the link below to fill out the scholarship application. Applications are due by August 1, 2023.
Scholarship Application
Contact us:
www.projectalive.org
give@projectalive.org
Speakers
Dr. Kim Stephens
Executive Director of the Joseph Muenzer MPS Treatment and Research Center, Board President of Project Alive
Lauren Francis Newhouse, OTD, OTR/L, SWC
Occupational Therapist - Senior Clinician at CHOC Children's Hospital and Adjunct Clinical Professor at California State University, Dominquez Hills
Angie Rowe
President and CEO of Beyond Blindness
Kristin McKay
Executive Director of Project Alive
Dr. Raymond Wang
Director of the Multidisciplinary Lysosomal Storage Disorder Program at CHOC. Board certified clinical geneticist and biochemical genetics specialist.
Ashly Weibelt, SLP
Speech Therapist
Lindsay Vose
IEP Advocate and Project Alive Consultant
Mark Dant
Volunteer Executive Director of The Ryan Foundation
Schedule
October 28
Expo
Expo & Networking (Fountain Terrace)
Exhibits, family networking, table games for kids open. Expo open all day.
Stage
Parents as Advocates (Catalina Ballroom)
MPS I parent and fierce advocate, Mark Dant will discuss the many ways that MPS parents advocate for their child. Learn about the best practices for effectively advocating for services, resources, and change within the school, hospital, or even the government. You'll learn the basics that can be applied anywhere while learning more about Mark's journey into advocacy.
Stage
Obtaining Services 101 (Catalina Ballroom)
Experienced IEP advocate and Project Alive consultant, Lindsay Vose, will discuss the best ways to obtain services in an IEP. This presentation will include the typical services rendered by students with MPS II, why those services are needed, and the accommodations that should be made within the classroom. Lindsay will also provide the best ways to advocate for those services when facing denials from the school district.
Stage
MPS II and Special Education (Catalina Ballroom)
President and CEO of Beyond Blindness, a local non-profit organization with a school for children 0-6 years old and extensive therapy services for children and adults with a variety of disabilities, Angie Rowe, gives an in depth look into providing a robust education to children with MPS II. She will discuss the common challenges faced by MPS II students: neurodegeneration (loss of skills over time), behavioral concerns including hyperactivity and attention span challenges, adaptive physical therapy or physical education needs, gross and fine motor delays in a classroom environment, and speech delays. As the leader of a school addressing children with a variety of abilities and challenges, Angie will share with our community and other educators how she addresses those issues and provides a learning environment suitable to each child's unique needs.
Stage
Therapy for Neurodegenerative Disorders (Catalina Ballroom)
Lauren Newhouse, OTD, OTR/L, SWC (she/her) 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
Speech Therapy & Assistive Communication Devices (Catalina Ballroom)
MPS II mother and speech therapist, Ashly Wiebelt, will present effective tools for working with children with MPS II in speech therapy. She will discuss alternative communication methods that are most appropriate for these patients and how that may change over time as disease progression alters the child's abilities with fine motor skills and cognition. Parents and providers welcome.
Stage
Keynote: MPS II Clinical Trials & Treatments (Catalina Ballroom)
Dr. Raymond Wang, Director of the Multidisciplinary Lysosomal Storage Disorder Program at CHOC, and Scientific Advisory Board member of Project Alive and the National MPS Society, will highlight available treatments and clinical trials for MPS II. This session will give a brief overview of MPS II and it's current treatment landscape and the hope for the future.
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