2024 Hunter Syndrome Family Fair

JOIN US!

Saturday, October 26, 2024

JOIN US!

Hunter Syndrome Family Fair

Join Hunter syndrome families, clinicians, therapists, educators, and other supporters in our second annual Hunter Syndrome Family Fair. Enjoy a variety of speakers, interactive workshops, and a resource expo! This event is free to anyone connected to the Hunter syndrome community, including all other MPS community members.

Hunter Syndrome Family Fair 2024

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 Hunter syndrome
Interactive workshops
Free kid's camp
Resource expo
Family connection
Breakfast and lunch will be provided
The WonderFall Family Festival will be held after this event. Please register for this event here: WonderFall Family Festival

WonderFall Family Festival

Following the Hunter Syndrome Family Fair, Project Alive teams up with the Hunter Syndrome Foundation to co-host the WonderFall Family Festival. This event will be held about a mile away from the conference hotel at the RoughRider's Stadium. The hotel has a free shuttle available. This event is open to the public. The WonderFall Family Festival will consist of carnival games, bounce houses, train rides, face painting, bingo, trunk or treat, and more! You will need to sign up for this event separetly. Please visit this page to learn more and get your tickets!

Room Block:

Project Alive has a room block at the conference hotel, the Westin Dallas Stonebriar Golf Resort & Spa. The room block rate ends September 25, 2024.

Please use this link to book your room using our group rate: Book your room here.

Scholarships:

There are a limited number of scholarships available. Scholarships will cover air fair/mileage, taxi fees, and two night hotel stay for up to 4 people within the same household. Travel arrangements can be reimbursed, or Project Alive can book them for you if paying upfront would cause financial burden. Scholarship awardees will need to attend one meeting with Project Alive to establish all travel arrangements, sign an award letter, and confirm receipt of award email by the deadline. Applications are due by July 15, 2024. If you are not selected for the scholarship, you will be placed on the waitlist in the event there is a cancellation or additional funding is obtained by Project Alive. Priority will go to families with the most financial need, families that are newly diagnosed, and families that have not attended a MPS conference in over 5 years.

Complete the scholarship application here.

www.projectalive.org

give@projectalive.org

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Speakers

Caroline Herring

Communications Teacher

Ricardo Cunegundes

Medical Director for Latin America at JCR Pharmaceuticals

Professor Simon Jones

Consultant in Paediatric Inherited Metabolic Diseases at the Willink Unit in Genomic Medicine, St. Mary's Hospital in Manchester, UK

Jacqline Gray

Director of Patient Support for Takeda's LSD Patient Services

Angela LeDay

Sr. Director Medical Science Liaisons

Laura Pisani, MD

Clinical Development Lead at REGENXBIO

Andrew Hoffman

Chairman of the Board of Project Alive, MPS II Dad

Jenn Hanebury Estevez

Project Alive Board Member, Community Connections Committee Chair, MPS II Mom

Joseph Muenzer, MD, PhD

Pediatric Geneticist and Researchers

Robin Harwell, M.A., CCC-SLP

GaitWay Therapist of the GaitWay to the Brain Program at MainGait Therapeutic Riding Center

Adrian Graham

CPR Instructor of NTX CPR

Shannon Tibbits

Family Support Specialist

Schedule

October 26

7:00 am - 8:00 am CST

Caverns

Check in, breakfast, networking, expo

Welcome! It's time to check in, enjoy breakfast, browse the expo, and chat with your fellow attendees.

7:30 am - 2:00 pm CST

Lonestar

Kid's Camp Opens

Check your kids in to the kid's camp so they can enjoy many games, crafts, and activities while you enjoy the sessions.

8:00 am - 8:30 am CST

Sunset Ballroom

Community Fireside Chat

Enjoy a moderated session with your fellow Hunter syndrome community members. This is a time to ask questions and share your wisdom and experience!

8:30 am - 9:15 am CST

Sunset Ballroom

CPR Workshop

Learn about first aid and CPR and even have a chance to practice your CPR skills. This workshop will allow you to feel prepared for any emergency response.

9:15 am - 10:00 am CST

Sunset Ballroom

Brain Building: How the Brain is designed to work, Why it doesn’t, and How to Change That

Hear from a neuroplasticity expert and therapist on how to incorporate simple exercises and activities into your child's daily life to promote connections in the brain.

10:15 am - 11:00 am CST

Sunset Ballroom

Hunter Syndrome Treatments and Clinical Trials

Dr. Joseph Muenzer, Director of Muenzer MPS Center and Bryson Distinguished Professor, 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.

11:00 AM - 11:15 AM CST

Sunset Ballroom

Denali Therapeutics Update

11:15 am - 11:30 pm CST

Sunset Ballroom

JCR Pharmaceuticals Update

11:30 AM - 11:45 AM CST

Sunset Ballroom

RGX-121 Gene Therapy for the Treatment of Severe Mucopolysaccharidosis Type II (MPS II): CAMPSIITE® Phase I/II/III: A Clinical Study Update

11:45 AM - 12:00 PM CST

Sunset Ballroom

Takeda Patient Support Overview

12:00 PM - 12:15 PM CST

Sunset Ballroom

Stem Cell Gene Therapies in MPS Diseases

12:15 PM - 12:30 PM CST

Sunset Ballroom

Industry Q&A

12:30 pm - 1:00 pm CST

Sunset Ballroom

Lunch

Enjoy lunch on us! Lunch will be provided in the kid's camp for all children participating in camp.

1:00 pm - 2:00 pm CST

Sunset Ballroom

Super Powering Your Child's Learning Experience

Family Support Specialist, Shannon Tibbits, and Communications Teacher, Caroline Herring, discuss ways to identify and embrace your child's different learning styles. The two will share how they empower parents to take the anxiety out of ARD/IEP meetings to set the tone for success.

2:00 pm - 2:00 pm CST

Sunset Ballroom

Closing

4:00 pm - 9:00 pm CST

Rough Rider's Stadium

WonderFall Family Festival

Head over to the Rough Rider's Stadium to join us at the WonderFall Family Festival! Prior registration for this event is required.

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