Melissa Hogan

Biography

Melissa Hogan is a lawyer by training, a writer by passion, and an advocate by necessity. She is the founder and Past President of Project Alive, a nonprofit foundation that supports research and advocacy in Mucopolysaccharidosis II or Hunter Syndrome, a rare disease affecting an estimated 2,000 boys worldwide including her youngest son. She wrote a blog for many years that was read in over 100 countries worldwide, sharing on topics ranging from rare disease research, caring for a child with special needs, fundraising, faith, and writing. She currently writes at melissajhogan.com about the intersection of her faith and caring for a child with special needs. She regularly speaks at rare disease conferences on topics such as patient outcomes research, clinical trials, patient engagement, and social media use in rare disease.

Where to find Melissa Hogan online

Videos

Watch the story behind the book
Calmer was inspired by the author's experience in caring for her son Case, diagnosed at 2 years old with the rare disease Hunter Syndrome. Meet Case and hear more about his journey and their fight to save him.

Books

Calmer: Medical Events with Cognitively Impaired Children
Price: $4.99 USD. Words: 9,250. Language: English. Published: April 2, 2012. Categories: Nonfiction » Health, wellbeing, & medicine » Children’s health, Nonfiction » Parenting » Childhood psychology
(4.75 from 4 reviews)
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.