ABOUT US
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.
OUR PAST INSPIRES OUR FUTURES
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.
2019: Coming Together
In 2019, 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: 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: 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.