When Melissa Hogan set out to graduate from Georgetown College, she never imagined that her career track and her then passion would create such meaning and direction to her family’s fight.
In 2009, Melissa’s son was diagnosed with Hunter Syndrome, a rare genetic disease in which the body is missing an enzyme. Missing this enzyme does not allow the body to break down essential molecules; causing a buildup of the molecules and then continued damage to the body itself. Because of Melissa’s background, she became more than a mother with a fight but an advocate, writer and spokes person for this disease. She became a shoulder for other families to rely on, a resource of knowledge and a voice to many.
Melissa’s son is now stable in his disease and Melissa has recently been appointed the FDA Patient Representative, allowing her to use her time to raise awareness, fund research and create a charge. A charge that will allow Hunter’s Syndrome patients the best of care, their families the answers they are seeking and more importantly a cure.
Yet, Melissa has not stopped, she founded the nonprofit organization, Saving Case & Friends. This organization has easily become a resource and platform of research for the Hunter Syndrome community and many other’s affected by the disease.
Soon after Case & Friends was founded, she wrote and produced Project Alive, an award-winning social media campaign raising awareness, research funding, and generating media and celebrity support from the likes of musician and actor Jared Leto, Seattle Seahawks coach Pete Carroll and financial guru Dave Ramsey.
“I want to take our foundation to the next level, where Hunter Syndrome is known to the general public, children are diagnosed early, and we are able to fully fund the gene therapy research we are currently supporting. Personally, I would love to publish a book and have one of my songs recorded by a major artist.In 2016, her song “Alive,” about the battle to save her son from Hunter Syndrome, was selected as a finalist in a major songwriting competition and the lyric video and awareness campaign went viral with over 100,000 views!”
Sources: Melissa Hogan, Saving Case & Friends.com