Filmmaker Raising Funds for Documentary About Rare Disease Hunter Syndrome

For the past year, documentary filmmaker Joey Howell has been filming a documentary called Boys with Bigger Hearts about the rare disease Hunter Syndrome. The project is raising funds via Kickstarter to finish the filming and production.
Two of those featured in the documentary: Trey Purcell and Simon Ibell
Two of those featured in the documentary: Trey Purcell and Simon Ibell
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Hunter Syndrome
Rare Disease


Parker - Colorado - US

Sept. 17, 2012 - PRLog -- DENVER, CO -- Imagine a disease so rare that there are only 2,000 possible sufferers in the world? How does one raise awareness and funds for a cure for that disease?

Filmmaker Joey Howell has known for years about the debilitating effects of the ultra rare disease Hunter Syndrome since two of his cousins suffer from it. Hunter Syndrome causes progressive physical effects such as heart and nerve damage, stiff joints, hearing loss, and restricted breathing. In most cases, it also causes progressive mental decline and challenging behaviors, as well as a shortened life span of approximately 12-15 years old.

So when Joey decided to go into film, a documentary about the heartache and joys of facing life with Hunter Syndrome came naturally. Thus began "Boys with Bigger Hearts."

Boys with Bigger Hearts tells the raw and honest stories of four families who face Hunter Syndrome head on. Two children, Jack and Trey, are cognitively affected and two men, Simon and Jordan are not, but all have faced and will continue to face significant challenges in their lives. Their stories are also ones of hope and inspiration.

Jamie Fowler, mother to Jack, is featured in the film and shares "We hope that everyone can take a moment to see and hear what it is like to sacrifice, trust, and always have hope for the future, Jack's future." Another mom featured, Deb Purcell, shares her reason for participating wprvr in the documentary: "We are fighting against the clock to find a cure, but we can't find a cure without funding and we can't get funding if no one knows what Hunter Syndrome is. This documentary will be a huge step towards the awareness we need to find a cure."

The documentary currently is participating in a fundraising challenge called Kickstarter, where the goal is to raise at least $30,000 for filming costs. With 5 days remaining in the challenge ending at noon EDT on September 22nd, they were able to meet that modest goal, but still need additional funds for production and post-production costs. They hope that the public will get behind their mission and raise additional funds in their final 5 days of the challenge.

To view the Kickstarter campaign, visit or for the film's website, visit

Joey Howell
Boys with Bigger Hearts
19016 E. Bellisario Creek Pl.
Parker, CO 80134
Source:Boys with Bigger Hearts
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Tags:Documentary, Hunter Syndrome, Rare Disease, Mucopolysaccharidosis
Industry:Media, Health
Location:Parker - Colorado - United States
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