Press Release (ePRNews.com) - CHARLOTTE, N.C. - Jul 27, 2017 - Finn Muedder, a smiling and energetic three-year-old, was diagnosed with Hunter Syndrome (MPS II), a rare and terminal disease, in the fall of 2016. Now his parents, Jon and Allison Muedder of Charlotte, NC, are helping raise $2.5 million needed to fund a clinical trial in hopes of saving Finn and other boys like him.
Hunter Syndrome is a rare, genetic condition that affects approximately 2,000 people worldwide, almost exclusively young boys, causing progressive loss of physical, and in most cases, mental and behavioral function. Kids slowly lose the ability to walk, talk, eat, and play, eventually becoming wheelchair-bound and often with a feeding tube as they progress in the disease. The average life span for someone with Hunter Syndrome is in the early teens.
As Jon so heartbreakingly describes, no one is prepared for such a diagnosis: “There are a lot of unspokens that you expect when you become a parent. You expect your kids to outlive you.”
After Finn’s diagnosis, Jon and Allison connected with other parents of children with Hunter Syndrome through a foundation called Project Alive. They learned about promising research in the field of gene therapy with the hope that one injection of a healthy copy of the gene implicated in the disease could be a long-term cure. But in order to even begin a clinical trial to test the treatment, the community had to raise $2.5 million [give here].
Jon, Founder and Creative Director at Caravan, an award-winning production company based in Charlotte, knew the one thing he could do to help – tell stories. Caravan has wowed clients from HBO to Pixar, AirBNB to BMW, with its ability to tell compelling stories through film, even receiving an Emmy nomination for its documentary short about Nobel Peace Prize winner and activist Malala Yousafzai.
Jon never thought that possibly the most compelling story he’d ever tell would be that of his son. “Finn” is the third installment in a series of documentary shorts helping raise awareness about Hunter Syndrome and funds for Project Alive to support the clinical trial. It’s already been recognized as a “Short of the Week” and Vimeo Staff Pick and described as the “pinnacle” of advocacy films.
Watch “Finn” at https://vimeo.com/226206321.
“I really do believe that if people knew these families and if people really knew how close we actually are to a cure, that they would be moved to step in and act,” Jon expresses near the end of “Finn.” Melissa Hogan, President of Project Alive and a Hunter Syndrome parent herself, is hopeful about their success in raising the funds needed: “Jon and the team at Caravan have taken what is a singular and devastating experience [your child being diagnosed with Hunter Syndrome] and allowed us to share it, not only with our own community and our family members, but with the world.”
To date, Project Alive has released a trailer and the first three episodes of the “Alive” series, with “Finn” being the most recent. They have raised over $450,000 so far toward their $2.5 million goal. The series can be viewed and donations made on GoFundMe or at ProjectAlive.org.
Follow the entire Project Alive campaign on their Facebook page at https://www.facebook.com/projectalive/. Source :