Muenzer MPS Research and Treatment Center to Host Advisory Council Meeting in Chapel Hill on January 7, 2025

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CHAPEL HILL, NC, UNITED STATES, December 30, 2024 /EINPresswire.com/ -- — The Muenzer MPS Research and Treatment Center, located at the University of North Carolina, Chapel Hill, will host an Advisory Council Meeting on January 7, 2025.

This pivotal gathering will bring together a group of dedicated parent advocates representing a wide range of MPS (Mucopolysaccharidoses) disorders to discuss key community needs, research gaps, and advocacy efforts.

Kristin McKay is the President and CEO of Project Alive. An organization fighting for awareness and support for Hunter Syndrome. She is on the Advisory Council for the Muenzer MPS Research Center. Her experience is invaluable to the organization. Her son Charlie is 6 years old and has Hunter Syndrome. She became familiar with the disorder when her brother Zach was diagnosed.

She adds: “A solid community has formed within the families dealing with MPS and Hunter Syndrome. The exchange of information has added hope and enlightenment.”

As the first standalone center of its kind, the Muenzer MPS Research and Treatment Center is solely focused on providing comprehensive care and advancing research for patients with MPS disorders. The center offers medical treatment, clinical trials, clinician education, and cutting-edge research designed to improve the quality of life for those affected by these rare and complex diseases.

The Advisory Council, comprised of parents and advocates from across the MPS community, plays a crucial role in ensuring that the Center’s work remains aligned with the evolving needs of patients and families. During the meeting, attendees will collaborate on strategies to further support the MPS community and drive forward meaningful advancements in research and care.

The Muenzer MPS Research and Treatment Center is committed to improving the lives of those affected by MPS disorders, through world-class care, innovative research, and a strong, united advocacy network.

About the Muenzer MPS Research and Treatment Center

Located at the University of North Carolina, Chapel Hill, the Muenzer MPS Research and Treatment Center is the first standalone facility dedicated to patients with MPS disorders. With a focus on comprehensive care, clinical trials, education, and research, the Center aims to transform outcomes for individuals living with these rare, progressive diseases.
About Project Alive

Project Alive is a nonprofit organization dedicated to finding a cure for Hunter syndrome (MPS II) through research, advocacy, and support. We are committed to improving the lives of those affected by this rare genetic disorder by funding cutting-edge research, raising awareness, and providing vital resources to families.

mike@ileanainternational.com or 310-913-0625

Mike Mena
Project Alive
+1 310-913-0625
email us here