2000 people worldwide live with MPS II (or Hunter Syndrome). This film tells the raw and honest stories of four boys affected.
Here's a little teaser made from some footage we shot in August of Jack Fowler. He just turned five this week and is an awesome little guy with so much love to share. Please help us make this film a reality!
I have already made 3 trips to start production on this film. These trips have been funded somewhat by me, but a majority by my amazing friends and family. I have a decent amount more to film and that involves traveling to the families and individuals. So this Kickstarter is to fund these trips and other production costs.
The goal amount for this campaign is less than what it will cost to accomplish this, but Kickstarter is an "all or nothing" platform so I chose a goal that I feel is more achievable. Anything above and beyond the goal will go directly towards post production expenses (editing, color correcting, audio mixing, sound design).
The end goal is a 45-60 minute length documentary. I hope this can educate as many people as possible about Hunter Syndrome and make this a more widely known disease. More awareness helps make a cure a closer reality.
The above picture is from my wedding. I'm with a couple of my groomsmen, Tyson and Jordan. They're my cousins and they have Hunter Syndrome. Jordan is 27 and lives in Arizona. Tyson passed away in 2007. He was 21 and a great friend. I'm very passionate about telling these stories and others of families and people affected by this rare and devastating disease.
Trey, 8, was diagnosed with Hunter syndrome in February of 2006. He is currently in the IT Elaprase trial at the University of North Carolina. IT Elaprase is a drug that is being tested on MPS II patients that are affected by the disease cognitively. Once a month, the Purcells travel from Vancouver, BC to Chapel Hill, North Carolina for Trey to participate in the study. In July 2012 I followed them from Vancouver to North Carolina to document one of these trips. My plan is to get to Vancouver again to document the progress Trey has made after more than a year being administered the drug.
Jack, 5, has a case of Hunter syndrome that is more severe. He receives IV Elaprase like every other MPS II patient, but his body is fighting the enzyme replacement instead of benefiting from it. As a result, his family is moving to Chicago after living in Denver for 16 years because a doctor in Chicago has committed to trying a form of treatment that will “trick” Jack’s body into accepting Elaprase instead of rejecting it. This is the best option for Jack at this point to see any improvements. His parents, Jamie and Jason, will do whatever is needed to help Jack have a better life. I was able to follow them on this journey and begin to document their story. I plan to document more of this story in the coming months.
Jordan, 27, is my cousin and is admired by the other people with Hunter syndrome that gather regularly in Phoenix because he lives fairly independently and is living into his late 20’s. He was in the IV Elaprase drug study back in the early 2000's. There is a high concentration of Hunter syndrome in Arizona.
Simon, 34, is a true inspiration and was one of the 96 people in the IV Elaprase enzyme replacement drug study starting when he was 25. Throughout his life Simon has been told numerous times by doctors that he was going to die from Hunter syndrome; however, he has never let this stop him from living life on his terms. He has used his love of sports and connections with the professional sports communities to raise awareness and funds for MPS II research. His iBellieve Foundation is purposed to find a cure for MPS II. He also has launched the Be Fair 2 Rare campaign geared towards raising awareness, funds and advocacy for the rare disease community in Canada.
In this documentary I plan to show Trey, Jordan, Simon and Jack's battles and triumphs with this rare, progressive, and debilitating disease and also the effects it has on their families as a whole.
What Will The Money Raised Be Used For?
- Travel Expenses to and from families and individuals in the story
- Equipment expenses
- Crew Expenses
- Post Production
The goal amount for this campaign is less than what it will cost to accomplish this, but Kickstarter is an "all or nothing" platform so I chose a goal that is more achievable.This means that if the goal of $30,000 in 30 days is not reached the funds raised will not be received. Anything above and beyond the goal will go directly towards production.
Have a question? If the info above doesn't help, you can ask the project creator directly.