Melissa J. Hogan is the mother of three boys, the youngest of whom was diagnosed with the rare disease Hunter syndrome (MSP II) as a toddler. Soon after her son’s diagnosis, she began to blog about what she was learning and her family's experience with her son’s condition. The blog connected her to a community of parents around the world whose children had Hunter syndrome or other chronic conditions. In 2014, Hogan and several other parents formed the non-profit Project Alive - now the leading non-profit focused on supporting treatments, cures, and advocacy for Hunter syndrome - and she served as its founding President. 

 

Through Project Alive and her own research on rare diseases and clinical trials, she began to work in the broader rare disease community as a speaker, advocate and advisor. Through this work she founded 

Doulots, LLC, where she provides consulting in rare disease patient outcomes research and clinical trial design in neurodegenerative disorders.

 

She designed and initiated a patient outcomes data collection on an investigational treatment for Hunter syndrome which she analyzed and presented to the FDA. She has also served on an international consensus conference on cognitive measures and endpoints for clinical trials in the MPS disorders. She serves as an FDA Patient Representative and on the FDA/CTTI Patient Engagement Collaborative, and is a member of the External Advisory Board of the Mayo Clinic Social Media Network. 

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She earned a Juris Doctor, with a focus on health law from the University of Pittsburgh School of Law where she served as the executive editor of the Law Review. Prior to founding Project Alive in 2014, she previously worked as an attorney, a consultant on law firm strategy, and an adjuct professor of legal writing and health care regulatory law.

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HONORS:

• 2018 Global Genes RARE Champion of Hope Award

• 2018 Distinguished Alumni Award, Georgetown College

• 2018 Engage Health Rare Disease Difference MakerTM Award

• 2016 Bronze Telly Award, Best Online Commercial, Nonprofit, for “Alive”

• 2014 National MPS Society Directors’ Award for Advocacy