About Project Alive

Mission & Vision

Project Alive exists to find and fund a cure for Hunter Syndrome (also known as Mucopolysaccharidosis or MPS II) through research and advocacy.

Project Alive is a powerful voice for children and adults with Hunter Syndrome, bringing together families and advocates with researchers, industry, and regulators. The organization funds promising curative research, assists researchers and industry with designing research studies for our community, and advocates for the most effective and efficient system of clinical research, evaluation, and approval. Through its innovative campaigns and grassroots efforts, Project Alive has made significant advances in public awareness about Hunter Syndrome and its symptoms, the need for early diagnosis, and available treatments and clinical trials.

 

History

Project Alive, originally organized as Saving Case & Friends, Inc., began as a blog in 2011 that was being read in over 100 countries. Its founder, Melissa Hogan, and a small group of moms pushed the necessity of awareness and gene therapy preclinical research of Hunter syndrome. Efforts to begin fundraising as Saving Case & Friends, Inc. moved them to organize and file to become a 501(c)(3) in 2013, receiving nonprofit status in 2014.

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 gene therapy researchers, allowing continued progress toward further gene therapy clinical trial phases. As Project Alive is growing close to its $2.5 million goal, it is also growing closer to the goal of FDA approval.

Project Alive is a nonprofit corporation organized under the laws of the State of Tennessee and is qualified under section 501(c)(3) of the Internal Revenue Code with a tax ID of 46-4617970.

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