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Patients as Partners Speaker Melissa Hogan Writes Song About Son’s Battle With Rare Disease and Named Finalist in Global Songwriting Competition
April 11, 2016
Congratulations to Patients as Partners speaker Melissa Hogan on being selected as a finalist in the International Songwriting Competition’s country category for the song she wrote titled “Alive”, which focuses on her son’s battle with the rare disease, Hunter’s Syndrome.
Melissa spoke at the 3rd annual Patients as Partners held March 2016 in Philadelphia where she shared her son’s story along with caregiver perspectives on what influences patients to consider clinical trial enrollment.
Watch the “Alive”: Lyric Video
Read the full press release:
LOCAL MOM WRITES SONG ABOUT SON’S BATTLE WITH RARE DISEASE AND IS NAMED FINALIST IN GLOBAL SONGWRITING COMPETITION
“Alive” Focuses on Son’s Fight Against Hunter Syndrome
NASHVILLE, Tennessee – A debut songwriting effort, written by a mother about her son and titled “Alive,” was selected as a finalist in the International Songwriting Competition (ISC)’s country category. The song is also up for the People’s Voice award, voted on by the public until April 15.
Co-written with acclaimed songwriter Mark Irwin, known for Grammy nominated “Highway Don’t Care” and other number one hits, and performed by Doug Stokes, “Alive” shares mother Melissa Hogan’s fight to save her son Case from the progressive and terminal Hunter Syndrome (also known as MPS II). It shares her son’s dream of growing up, not to be a firefighter or a football star, like many children, but just to be alive: “I want to live my life, grow into a man / I want to watch my mom grow old and hold her hand / I want to be alive.” It shares a dream that most parents take for granted.
The ISC competition took notice of the classic vocal and acoustic guitar single, first naming it a semi-finalist earlier this month, then announcing it as a finalist. It is a song of both sorrow and hope, reflecting Hogan’s reaction to his diagnosis at two years old and then efforts to find a cure for his disease. A lyric music video for “Alive” was also released today on YouTube, accompanying the announcement of the song’s finalist status.
Not only a songwriter, Hogan is a former practicing attorney who also runs a foundation named after her son, Saving Case & Friends. The organization funds research to cure Hunter Syndrome, which affects approximately 2,000 children worldwide and typically results in loss of physical and cognitive skills and death by early teens. She notes, “Whether it’s running our foundation, blogging, or writing music, it all comes from the same place – my love for my son and hope for his future.” Hogan blogs for various news outlets – like The Huffington Post and disability-focused website The Mighty – about topics such as rare diseases and parenting a child with special needs.
Her creativity is on display not only in her songwriting and blogging, but also in her award-winning video production efforts for her foundation. Last year, she wrote and produced a video called Project Alive that recently received a Telly Award in the online commercial category. The video itself is a tearjerker and caught the attention of the public and celebrities alike. Actor and musician Jared Leto, Seattle Seahawks coach Pete Carroll, and financial guru Dave Ramsey, among other celebrities, all filmed videos about what they wanted to be as children, urging support for and sharing Project Alive’s efforts.