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'Bound by Hope' and Prepared by Columbia High School

How Columbia High's television arts program ultimately led two grads to create a documentary on a rare genetic disease.

Lauren Brauchli and Anna Campbell, both of Maplewood, have known each other since first grade. They graduated from Columbia High School in 2007 and went on to Ithaca College together where they both major in communications. In their opinion, they owe their choice of major and success at college to Columbia's Television Arts Program.

“The program at Columbia is leaps and bounds better than some of the colleges we looked at,” remarked Brauchli.

“It put us way ahead of some of the students in our classes,” added Campbell.

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Brauchli and Campbell gained real world experience while taking every television and video production class offered at Columbia. In their senior year, they both earned the position of director for Columbia News Network's (CCN) PM News Show. CNN is Columbia's in-house television station run completely by students and overseen by television arts teacher Anthony Campiglia. The PM News show is a monthly live news show put on by students that airs on Maplewood/South Orange’s public access station SOMAtv.

Brauchli and Campbell took their love of television to Ithaca College. In their first semester of senior year they chose a documentary workshop class. The class required them to find a topic, plan, shoot, edit and deliver a complete documentary by the end of the semester. While they were researching possible topics, they stumbled upon a rare genetic disorder that caught their eye — and later their hearts. Fibrodysplasia Ossificans Progressiva (FOP) occurs in one in two million people. There less than 700 known cases in the world. The disease effects children by the age of 10. It transforms muscles, tissues and ligaments into bone. It progressively immobilizes the body and joints. The average life span of an FOP patient is 40 years.

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Their search brought them to Josha Scoble of Emmaus PA. Josh is a typical four-year-old boy who likes to do typical four-year-old boy things — except he can't lift his arms up. The bones in his upper back and neck are fused. He has to be very careful, and his parents have to keep a watchful eye on him at all times. A bruise or a bump can cause a flare up of the disease and more fusing of injured tissue into bone.

Brauchli and Campbell decided that this would be their topic and began filming what would become their documentary “Bound by Hope, One Family's Story.” What made up their minds for them was the fact that, when Scoble was on the Today Show in an effort to bring awareness to FOP, he was overshadowed by the balloon boy hoax.

“We didn't think it was fair that attention was taken away from Josh and FOP for someone that just wanted 15 minutes of fame,” said Brauchli.

The Scobles accepted Brauchli and Campbell's offer and opened their lives to them. The Scoble's wanted to bring awareness to FOP and to educate people on the disease. Brauchli and Campbell needed a compelling topic. But what started out as a school project turned into so much more. To their surprise, Brauchli and Campbell became emotionally invested in the documentary. The Scoble's openness and Josh's bubbling personality captured their hearts.

“It became so much more than the documentary we were making. We asked ourselves 'How do we save them? How do we help them?' You just wanted to go home and hug a kid,” Brauchli comments.

Over the next two and half months, the pair drove out to Emmaus, PA and to the University of Pennsylvania to document Josh's life and to interview the lead researcher on FOP, Dr. Frederick Kaplan. At Thanksgiving, they visited Whitney Weldon, an 18-year-old Morristown, NJ resident who is battling FOP and raising funds to research treatments and a cure for the disease. They put in many hours discussing, editing and re-editing the footage. In the process, they built upon the educational foundation they received at Columbia High School.

For Anna Campbell, the work she did on the documentary reaffirmed her love of documentaries. She plans to go into the field after graduation. For Lauren Brauchli, "I'm still undecided. But it showed me that I have a passion for this."

For more information on Josh, please visit www.joshuasfop.com and www.bingoforacure.com

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