Melissa Hogan is a lawyer by training, writer by passion, and advocate by necessity. She is the creator and founder of SavingCase.com, a website dedicated to her son Case's fight against Mucopolysaccharidosis II or Hunter Syndrome, a rare disease affecting an estimated 2,000 boys worldwide. Case was miraculously diagnosed at the age of two after Melissa's mother, a registered nurse, saw an episode of Mystery Diagnosis about a boy with Hunter Syndrome. Since that time, Melissa has refocused her experience as a lawyer and strategic consultant to researching, writing, and speaking about topics so that newly diagnosed families do not have to "recreate the wheel" when being thrust into this new life of caring for a child with rare disease. From lists of home infusion supplies to therapy options, research strategies to fundraising, as well as updates about her son's participation in the first intrathecal clinical trial for Hunter Syndrome, Melissa has connected families from around the world. Since it began in early 2010, SavingCase has had visitors from every state in the U.S. as well as over 100 other countries. In addition to the website, she also uses other social media strategies such as Twitter and Pinterest to support families, raise awareness, and bring the condition down to a personal level through the eyes of one affected family.
Where to find Melissa Hogan online
Calmer: Medical Events with Cognitively Impaired Children
This short book offers a toolbox of workable strategies described in parent, not psychologist, terms that are designed to reduce medical trauma in your special child. The strategies are drawn from the work of the author with her son who suffers from a rare condition called Hunter Syndrome, sees ten specialists, four therapists, has a weekly infusion, and is in a clinical trial.