Case Hogan brought home a picture from his kindergarten teacher that said he wanted to be a fireman. Most parents would “ooh and aah.” grab their camera, and head for the fire station to start fulfilling their child’s dreams.
But for Case’s mom – Melissa Hogan – that moment was an epiphany. “I never thought of him becoming a fireman. I just want him to be alive when he grows up.”
Case suffers from Hunter Syndrome or Mucopolysaccharidosis II, an ultra rare disorder that robs the body of an enzyme needed to break down cellular waste. As a result, the buildup causes progressive organ, bone and joint, and neurological damage, and in most cases, progressive brain damage with an average life span of 12-15 years old.
The epiphany generated a moving awareness and fundraising campaign called Project Alive that Melissa and her foundation, Saving Case & Friends, recently launched to fund gene therapy, a promising treatment for Hunter Syndrome. The campaign features children who share what they want to be when they grow up contrasted with boys with Hunter Syndrome who just want to be alive. It has resonated with moms, dads, firefighters, and even celebrities, who have sent in videos and photos with the hashtag #WhenIGrowUp about what they had wanted to be as a child when they grew up.
Most recently, Jared Leto, winner of an Academy Award for his role in Dallas Buyer’s Club and lead singer of band Thirty Seconds to Mars, filmed and released a video in support of the campaign from the set of his role as the Joker in the upcoming Warner Brothers’ release Suicide Squad.
Leto joined other household names like head coach of the Seattle Seahawks Pete Carroll, and top radio host Dave Ramsey. The campaign even features a video of Case with his father, national speaker Chris Hogan, a regular face on CNBC about finance.
Melissa and Chris started the foundation with several other Hunter Syndrome families because they knew the science was moving toward the ability to cure Hunter Syndrome through gene therapy.
The only impediment? Funding.
Melissa recognized, “Academic programs just can’t generate the significant funds needed to bring these treatments to market, especially in time to save this generation of children, which is our goal. We will go big or go home.”
What would it take for them to reach this goal – to “go big” as she puts it? A price tag of around five million dollars probably sounds steep to most, but the community has rallied around the campaign and the grassroots effort has begun spreading on social media. And as the Project Alive video states, if enough people just gave $1 for every healthy child in their life, they know they could reach their goal in time.