Celebrity Support Grows For Project Alive Campaign With Video from Academy Award Winner Jared Leto
Parents of children with the rare disease Hunter Syndrome launched a compelling awareness and fundraising campaign with celebrity support including Seattle Seahawks head coach Pete Carroll and radio host Dave Ramsey. The support continues to grow as Oscar-winning actor, director, and musician Jared Leto urges his fans to support the effort.
By: Project Alive, a campaign of Saving Case & Friends
That plea has garnered the attention of celebrities like Academy Award winner, director, and musician Jared Leto. He posted a video on social media today sharing what he wanted to be as a child when he grew up and urging viewers to support the Project Alive campaign, which is raising funds for research to cure the ultra rare disease Hunter Syndrome.
He joins good company as the campaign had already garnered celebrity support from the likes of Pete Carroll, head coach of the Seattle Seahawks, top radio host Dave Ramsey, Papi Le Batard from ESPN’s “Highly Questionable,”
Nashville filmmaker David Kiern partnered with parents of children suffering from Hunter Syndrome to create a powerful and tear-jerking video contrasting children dressed up as doctors, singers, basketball players, and police officers, adorably expressing their dreams, with boys who slowly lose the ability to walk and talk with a life span in the teens.
The celebrity supporters didn’t know about Hunter Syndrome until families reached out to them, because it’s so rare that it only affects approximately 2,000 patients worldwide. Hunter Syndrome, also known as Mucopolysaccharidosis II, causes progressive physical damage to the heart, bones, joints, airway, and nervous system. In most cases, it also causes progressive mental decline and challenging behaviors, with a life span in the early teens.
The campaign asks viewers to give $1 for every healthy child in their life and to share the video and dreams of what they and their children want to be with the hashtag #WhenIGrowUp. It is sponsored by Hunter Syndrome nonprofit Saving Case & Friends and is using the funds to support research using gene therapy, the closest thing to a cure for the condition. The parent-led leadership team has been working with researchers for the last three years to fund the research and progress to this point, but now are facing a large financial hurdle to reach the next stage – human clinical trials. They are looking to raise $5 million to fund the clinical trial.
To view the video or other parts of the campaign, including the celebrity videos, or donate to support their efforts, visit ProjectAlive.org. Also, follow @ProjectAlive on Instagram (https://instagram.com/