Our History

Project Alive is recognized as one of the leading advocacy groups in MPS II and in rare disease. Learn more about our journey and how we have grown. 


Looking How Far We've Come

Learn about our past and how we've been serving the MSP II community for years. 

2014: Saving Case & Friends Founded

Project Alive's humble beginnings started under the name "Saving Case & Friends." Starting as a blog for Hunter syndrome families, our founder decided to form an organization to promote research and advocacy after seeing the outpouring of motivated families. 

2015: A Fresh Start

In 2015, the organization name was changed to Project Alive allowing the name to represent the future mission, vision, and purpose while also representing all affected boys and their families. Since 2015, there has been ongoing collaboration with researchers, allowing continued progress toward further gene therapy clinical trial and treatments.

2018: Broadening Our Horizons

In 2018, the Project Alive mission broadened to focus on all the clinical trials in the MPS II space. The focus included efforts to align trial outcome measures with the abilities of patients impacted by Hunter syndrome. In addition, advocacy efforts were amplified to include legislative efforts at both the local and federal levels. Project Alive also expanded the board to be more representative of the patient population and widen the diversity of its members.

2018: Clinical Trials Begin

In 2018, the first child was dosed with gene therapy through RGX-121. Soon after, patients began enrolling in DNL310 and JR-141. All of these drugs are believed to treat the neurological damage caused by Hunter syndrome. Today, all three drugs are in Phase 3 of the clinical trial process. Project Alive is committed to doing the necessary work to see these drugs approved by the FDA.

2019: New Leadership

Project Alive hires Dr. Kimberly Stephens as President. Dr. Stephens led the path to true collaboration with pharmaceutical companies to assist in patient-centered clinical trial design. She spearheaded Project Alive's mission to have Hunter syndrome added to the RUSP and saw that come to fruition in 2022. 

2020: Coming Together

In 2020, Project Alive held its first Hunter Syndrome Community Conference (HSCC) — a virtual conference connecting patient and caregivers with experts in MPS II and furthering the community's understanding of clinical trials and resources available. The conference continues to be held yearly and is open to all patients, caregivers, and anyone with an interest in MPS II.

2022: New Executive Director

In August of 2022, Kristin McKay was hired as the Executive Director of Project Alive. Kristin began as a volunteer and then a board member of Project Alive starting in 2019. As Dr. Stephens began to prepare for her departure to serve as the Executive Director of the Muenzer MPS Research and Treatment Center, she worked closely with Kristin until the end of 2023. Kristin has spearheaded many new initiatives with Project Alive and is working hard to expand the organization's reach.

2022: Hunter syndrome added to RUSP

Due to efforts from Project Alive staff and board, alongside other patient advocacy organizations and individuals, Hunter syndrome was added to the Recommended Uniform Screening Panel (RUSP). Project Alive quickly jumped into assisting in efforts to advocate for each state to add the disorder to their newborn screening panels.

2023: The First Hunter Syndrome Family Fair

In October of 2023, Project Alive hosted the first Hunter Syndrome Family Fair. Many families came together in Costa Mesa, CA to hear from fantastic speakers, learn about clinical trials, and connect with each other. It was so exciting to host the first in person conference and look forward to all the years ahead!

2023: New Mission

Project Alive announces an expanded mission:

"Project Alive exists to find a cure through research and advocacy, and provide education and resources to the Hunter syndrome community."

New programs were announced alongside outlined goals for 2024. Project Alive expressed their excitement to focus on the necessary advocacy to assist treatments currently in clinical trial to reach FDA approval, provide solutions to the every day challenges of the Hunter syndrome community, and expand it's efforts towards Hunter syndrome research.