UNC Muenzer MPS Center

06/08/2026

The Muenzer MPS Research & Treatment Center was proud to be represented at the 18th IMPS Network Symposium, held June 4–7, 2026, in Florence, Italy.

Dr. Joseph Muenzer delivered the keynote address, "Back 20 Years, Looking to the Next 20: A Vision for the MPS Community," and Lindsay Torrice, MSN, CPNP-PC, presented her research, "A Novel Locus-Specific GUSB Variant Database to Improve Diagnosis and Disease Severity Prediction in Mucopolysaccharidosis VII."

Leigh Anne Weisenfeld, MSW, LCSW, Lindsay Torrice, MSN, CPNP-PC, and Dr. Monika Williams were also featured alongside the poster, "Developmental Testing in Neuropathic MPS Disorders: Challenges and the Need for Administration Guidelines," highlighting important considerations for neurodevelopmental assessment in MPS.

We are honored to collaborate with the global MPS community as we work to advance research, improve care, and create a brighter future for individuals and families affected by MPS.

06/06/2026

Congratulations to Dr. Joseph Muenzer!

The UNC Muenzer MPS Research & Treatment Center is proud to share that Dr. Muenzer received the Life for MPS Award at the IMPS Network Symposium in Florence.

This recognition honors his decades of leadership, research, and dedication to improving the lives of individuals and families affected by MPS around the world.

Please join us in congratulating Dr. Muenzer on this well-deserved honor.

06/04/2026

Today at the IMPS Network Symposium, Dr. Joseph Muenzer delivered a keynote address during the MPS Scientific Program, sharing his vision for the future of MPS care, research, and advocacy.

During his presentation, “Back 20 Years, Looking to Next 20: A Vision for the MPS Community,” Dr. Muenzer reflected on two decades of progress in MPS research, patient care, and treatment advancements while discussing the opportunities and challenges that lie ahead for individuals and families affected by MPS.

We are proud to see Dr. Muenzer representing the UNC Muenzer MPS Research & Treatment Center and contributing to important discussions that continue to advance care, research, and hope for the global MPS community.

06/04/2026

06/01/2026

Congratulations to Lindsay Torrice, MSN, CPNP-PC, Director of Clinical Research at the Muenzer MPS Research & Treatment Center, on her promotion to Associate Professor in the UNC Department of Pediatrics.

Lindsay has dedicated her career to advancing research, improving clinical care, and supporting individuals and families affected by MPS and related lysosomal storage disorders. Her leadership has played an important role in clinical trials, patient care initiatives, and educational programs that continue to make a meaningful impact within the rare disease community.

We are proud to celebrate this well-deserved achievement and grateful for her continued commitment to patients, families, research, and the mission of the Muenzer MPS Research & Treatment Center.

Read more: https://www.med.unc.edu/pediatrics/2026/05/torrice-promoted-associate/

Lindsay Torrice, MSN, CPNP-PC was promoted to Associate Professor of Pediatrics effective May 1, 2026. Ms. Torrice has been a faculty member at UNC since 2016. Congratulations!

06/01/2026

Every MPS journey is personal, and for Dr. Kim Stephens, Executive Director of the Muenzer MPS Research & Treatment Center, that journey began with her son, Cole.

In this video, A New Hope for Hunter Syndrome, Dr. Stephens shares her family's experience navigating Cole's MPS II (Hunter syndrome) diagnosis, the challenges they faced, and how those experiences led her to become a dedicated advocate for individuals and families affected by MPS.

If you or a loved one has been diagnosed with MPS, we invite you to learn more about the comprehensive care, consultation services, and research opportunities available through the Muenzer MPS Research & Treatment Center at UNC. Our multidisciplinary team is dedicated to supporting patients and families throughout their journey.

To learn more or schedule a consultation, contact us at [email protected] .

Watch the video: https://www.youtube.com/watch?v=h-X-zDChEgc

Cole was diagnosed with Hunter syndrome as a toddler and told he might not live past 15. After years of treatment and a long wait, a newly FDA-approved thera...

05/29/2026

⚾❤️ More than a baseball game.

A new article from the UNC Health Foundation highlights the impact of MPS Awareness Night at Carolina Baseball and the meaningful connections it created for families served by the Muenzer MPS Research & Treatment Center.

The evening brought together approximately 25 MPS families and MPS Center staff for a night focused on community, awareness, and support. For many families, it was a rare opportunity to spend time together outside of clinic visits, treatments, and medical appointments. The event also honored the legacy of JR Anton, whose connection to Carolina Baseball continues to inspire the MPS community.

Thank you to Carolina Baseball, UNC Health Foundation, our MPS families, and everyone who helped make this special evening possible.

Read the full article: https://unchealthfoundation.org/gifts-at-work/childrens-health/mps-families-find-community-at-carolina-baseball-awareness-night/

On a recent evening at UNC’s Boshamer Stadium, the focus extended beyond the game. Families connected to the Muenzer MPS Research & Treatment Center gathered for Carolina Baseball’s MPS Awareness Night—an event designed to raise awareness for mucopolysaccharidoses (MPS), a … Read more

05/25/2026

🇺🇸 Memorial Day 🇺🇸

Today, we honor and remember the brave men and women who gave their lives in service to our country. Their sacrifice helped protect the freedoms we cherish and will never be forgotten.

At the Muenzer MPS Research & Treatment Center, we are grateful to all who have served and to the families who carry their legacy forward. We remain committed to compassionate care, groundbreaking research, and improving the lives of individuals and families affected by MPS.

This Memorial Day, we pause in remembrance and gratitude.

05/21/2026

When someone is diagnosed with an MPS disorder, one of the most common questions families ask is: What treatment option is best?

In this video, Dr. Elizabeth Jalazo from the UNC Muenzer MPS Research & Treatment Center discusses treatment considerations for individuals living with MPS, including how care decisions may vary based on diagnosis, symptoms, and individual needs.

Watch the video to learn more: https://youtu.be/5nU6bvVGSf4

The Muenzer MPS Research & Treatment Center provides multidisciplinary care, consultations, and long-term support for individuals and families affected by MPS disorders.

A plain-language summary of current options—enzyme replacement ther...

05/19/2026

💙 A vision years in the making for the MPS community 💙

The UNC Muenzer MPS Research & Treatment Center opened in 2024 with a goal of expanding specialized care, research, and support for individuals and families affected by mucopolysaccharidoses (MPS), a group of rare genetic disorders.

The center was made possible through a transformational $10 million philanthropic gift from the Bryson family and was created to strengthen clinical care, advance research, expand education, and improve access to MPS expertise.

Today, the center supports multidisciplinary care, genetic counseling, developmental testing, clinical research, and consultation services for families and healthcare providers. The Clinical Consultation Program is funded entirely through donor support, helping connect more individuals with specialized MPS expertise.

Named in honor of Dr. Joseph Muenzer, whose decades of work have helped shape MPS research and treatment worldwide, the center continues to build on a longstanding commitment to improving outcomes for patients and families.
📰 Read the story behind the center’s opening:
🔗 https://news.unchealthcare.org/2024/10/unc-childrens-opens-muenzer-mps-center-in-chapel-hill/
📞 (919) 228-2432
📧 [email protected]
🌐 https://www.med.unc.edu/pediatrics/muenzer-mps-center/

UNC Children's has opened the Muenzer MPS Research and Treatment Center dedicated to improving the lives of patients with mucopolysaccharidoses (MPS), a group of rare inherited conditions, and advancing research with the goal of creating better therapies.