Building a Future Together

A MPS II COMMUNITY CONFERENCE

BUILDING A FUTURE TOGETHER

A MPS II COMMUNITY CONFERENCE

BUILDING A FUTURE TOGETHER

Join Project Alive for a day of learning, connection, and fun for the Hunter syndrome community! This event will be held on Saturday, May 3, 2025 at the Rizzo Center in Chapel Hill, NC followed by a tour of the MPS Center on Sunday, May 4, 2025.
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Event Details

About the Conference

Project Alive is thrilled to host the Building a Future Together conference on May 3rd, 2025. The conference will bring together families impacted by MPS II, clinicians and other providers, industry partners, and advocates. Families will hear from industry, learn about topics that frequently impact the community, and network with their peers. Families of other MPS types are welcome to join us using the same MPS family ticket options.

Following the conference, attendees will have an opportunity to join us on May 4th at the Muenzer MPS Research and Treatment Center for a tour of the facilities.

Room Block

There is a room block at the Rizzo Center for all guests to utilize at a discounted rate. The room block is available for the nights of May 2nd and 3rd. You must book by April 11th to utilize the discounted rate. There are King and Double Queen rooms along with ADA rooms available. If you'd like to extend your stay, we recommend you call the hotel with the room block information to have them assist you with your reservation. 

Book Hotel Rooms

Scholarships

Scholarships are available for families impacted by any form of MPS. Scholarships will include the full cost of airfare (or mileage/rental car reimbursement), hotel stay for 2 nights, and conference registration for up to 4 members of the household. Applications will be reviewed by a panel to determine awardees. Priority will be given to families based on factors including having a child that has been diagnosed in the last two years, previous ability to attend any MPS conferences, and financial need. The number of families awarded will be dependent on available funding and costs per family for their travel. Scholarship applications will close on March 15, 2025. Awardees will be notified within one week. Awardees will be allotted one week to confirm their acceptance before their award is released to families on the waitlist. 

Scholarship Application

 

Translations & Closed Captioning Services

Live translations and closed captioning will be provided through a mobile app. Please see our registration table at the conference and scan the QR code to access these services. At this time, Spanish is the only available language. Please let us know if you need translations for a different language and we will do our best to accommodate. 

 

Kids Camp

Child care is available at no cost to families impacted by MPS. Affected children and unaffected siblings are welcome to attend. Infants to teens welcome. There is limited availability for child care so please ensure you register early and complete all necessary forms. Registration for child care will close on April 21, 2025.

Kids Camp will be hosted by our trusted partner, Beyond Blindness. Beyond Blindness is a nonprofit organization in Southern California with the mission to empower children with visual impairments and other disabilities to achieve their fullest potential. They provide early intervention (both in home and in a day class), preschool classrooms, robust therapy services, and more. Beyond Blindness has 60 years of experience caring for children of all abilities and have had children with MPS in their school! To learn more about their program, please visit www.beyondblindness.org.

Sign Up for Kids Camp

 

SibShop

This year, our conference will feature a SibShop opportunity! This session will be geared towards unaffected siblings within the ages of 7-16. This session is free to all siblings that have a sibling with MPS, including bereaved siblings. SibShops are a fun way for siblings to connect, share their experiences, and learn helpful coping skills through a playful approach.

You can register your interest in SibShops when you place your conference order. You will receive an additional email for any specific information needed in order to complete the registration for SibShops.

 

MPS Center Tour

A tour of the Muenzer MPS Research and Treatment Center will be available on the morning of May 4th. You may select to add the tour when registering for the conference. Tours will last roughly 10-15 minutes and will be given in groups of 8-10 people. Your household will be able to do the tour together. 

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Speakers

Jennifer Siedman
Jennifer Siedman
Director of Community Engagement, Courageous Parents Network
Leigh Anne H. Weisenfeld, MSW, LCSW
Leigh Anne H. Weisenfeld, MSW, LCSW
Clinical Instructor, Muenzer MPS Research & Treatment Center
Kyle Underwood, MHA
Kyle Underwood, MHA
Chairperson of the Board, Project Alive
Joseph Muenzer, MD, PhD
Joseph Muenzer, MD, PhD
Bryson Distinguished Professor of Pediatrics, Pediatric Geneticist and Research, Director of Muenzer MPS Research & Treatment Center
Kristin Carleton
Kristin Carleton
CEO, All Needs Planning
Kim Stephens, PhD
Kim Stephens, PhD
Executive Director, Muenzer MPS Research & Treatment Center
Jennifer L. Cohen, MD
Jennifer L. Cohen, MD
Assistant Professor of Pediatrics in the Division of Medical Genetics at Duke University, PI for PEARL Clinical Trial
Nathan Grant, MPhil
Nathan Grant, MPhil
President and Founder, Siblings with a Mission, Harvard Medical School Student
Kristin McKay
Kristin McKay
President and Executive Director, Project Alive
Schedule
May 03
7:00 AM - 7:45 AM EST
Registration Opens & Breakfast
7:45 AM - 8:00 AM EST
Welcome Address
8:00 AM - 9:00 AM EST
Financial Planning in a Rare Disease Family
9:00 AM - 9:45 AM EST
Behaviors in Hunter Syndrome
9:45 AM - 10:00 AM EST
Break
10:00 AM - 10:10 AM EST
DNL310 Study Presentation
10:10 AM - 10:20 AM EST
JR-141 Study Presentation
10:20 AM - 10:30 AM EST
RGX-121 Study Presentation
10:30 AM - 10:40 AM EST
Takeda Pharmaceuticals
10:40 AM - 10:50 AM EST
Stem Cell Gene Therapies in MPS Diseases
10:50 AM - 11:00 AM EST
Interim Results from the PEARL Trial: Prenatal Enzyme Replacement Therapy
11:00 AM - 11:10 AM EST
Q&A
11:10 AM - 11:40 AM EST
Lunch
11:40 AM - 12:30 PM EST
Courageous Parents Network
12:30 PM - 1:15 PM EST
Breakout: What I Wish I Knew Earlier
1:15 PM - 1:45 PM EST
The Journey in Aging with Hunter Syndrome
1:45 PM - 2:00 PM EST
Muenzer MPS Research & Treatment Center Overview
2:00 PM - 2:10 PM EST
Closing Remarks
Schedule
May 04
8:00 AM - 10:00 AM EST
MPS Center Tour

May 3, 2025 | Chapel Hill, NC

Cure Within Reach Gala

Join us for an unforgettable evening at the Cure Within Reach Gala, a premier event dedicated to advancing research, advocacy, and care for individuals affected by MPS. Hosted at the prestigious Carolina Club in Chapel Hill, NC, this special night will bring together supporters, advocates, and leading experts in the field to fuel hope and progress.

Together, we are bringing a cure within reach.

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