Saving Case & Friends, Inc. is a 501(c)(3) nonprofit research & advocacy foundation (EIN: 46-4617970) organized in 2014 with a mission of finding and funding a cure for Hunter Syndrome.
In 2009, Melissa and Chris Hogan’s two-year-old son Case was diagnosed with Hunter Syndrome after his grandmother saw an episode of the show Mystery Diagnosis about a boy with the condition. When she mentioned her suspicions, they quickly realized that Case had this rare condition.
At the time, Hogan was an attorney and strategic consultant, but she shifted her focus to advocacy in the Hunter Syndrome community. She began blogging at SavingCase.com in 2011 when Case entered the first clinical trial to try to treat the cognitive decline associated with Hunter Syndrome. She continued writing, advocating, and supporting newly diagnosed families during a four-year period of travel and other commitments required by the clinical trial.
Meanwhile, research in Hunter Syndrome was moving slowly especially in the area of an actual “cure.” Parents were forced to watch their children lose the ability to talk, walk, and eat, and eventually pass away even though the science had advanced to potentially save this generation of children. Hogan and three other parents of children with Hunter Syndrome formed Saving Case & Friends to help fill the existing gap to find and fund a cure for Hunter Syndrome.
Saving Case & Friends has established credibility in the Hunter Syndrome and rare disease community and intends to build on that network to establish a long-term platform to support Hunter Syndrome research. Hogan has become a Patient Representative with the FDA, a sought after speaker and writer on rare disease issues, and a passionate patient advocate for the most effective and efficient clinical research in rare conditions such as Hunter Syndrome. She also serves on the External Advisory Board for the Mayo Clinic Center for Social Media and the Corporate Alliance and Advocacy Leaders Board of Global Genes.
Saving Case & Friends works tirelessly with academic, industry, and regulatory partnerships to streamline the research and regulatory processes in order to bring effective treatments to clinical stage and eventually to market. Its mission is to save this generation of boys. A cure is on the horizon.
For more information on the history of Saving Case & Friends, including Case’s story and the backstory of our name, visit our History page.