Project Alive Information

Project Alive exists to find a cure for Hunter syndrome through research and advocacy, and provide education and resources to the Hunter syndrome community. Project Alive (formerly named Saving Case & Friends) is a strong and powerful voice for children and adults with Hunter Syndrome, bringing together Hunter Syndrome families and advocates with researchers, industry, and regulators, funding the most promising research with potential for in-their-lifetime treatments, assisting researchers and industry with designing research studies with the most promise for our community, and advocating for the most effective and efficient system of clinical research, evaluation, and approval. Project Alive leverages its resources to: - Advocate and raise funds for research funding and progress toward a cure; - Encourage efficiency and effectiveness in clinical trials of medications to treat or cure Hunter Syndrome; and - Advance public understanding of Hunter Syndrome, its symptoms, the need for early diagnosis and treatment, and the need for research, via traditional and social media efforts, grassroots campaigns, and public advocacy efforts.