TOF FILM PROJECT

In 2011, we started on a project, The TOF Film Project, to capture on film some of the remarkable and heart-warming stories of our students. We engaged Ben, 26, who had just won a national award for a documentary filming the stories of three families at a pediatric end-of-life home, as the creative director for the film. Kaitlin, a TOF grantee and student in medical anthropology at UC Berkeley joined us to assist in the interviews. Jennie Berlekamp, Piedmont, CA, stepped up with a grant of $5,000 to cover production costs.

We decided to film three very different students. Lizz, an undergraduate drama major at U.C. Irvine, has juvenile rheumatoid arthritis – The Orion Fund paid for her infusions for the school year. Lizz tells her story of the impact rheumatoid arthritis has had on her chosen career. Kolya is a student at UC Berkeley, majoring in interdisciplinary studies, with advanced Crohn’s Disease. The Orion Fund paid for uncovered medical costs for Kolya – his favorite saying often starts with “after 10,000 hours in the hospital…”. Kolya chose to tell the story of his good friend Gideon, who died in 2011 from Crohn’s. Then there is Paula, now a legislative assistant in Sacramento, who graduated from UC Berkeley in political science. The Orion Fund paid living and medical costs for Paula when she was diagnosed with Ewing’s sarcoma, with metastasized tumors to her lungs while a junior at UC Berkeley. Initially given a 15% chance of survival, Paula is doing well now.

Ben has assembled the three videos together into a short movie.

I would like to thank Paula, Kolya, Liz, Jennie, Ben, and Kaitlin from the bottom of my heart, for your stories, time, efforts, and insights. Many hugs to all of you, you are all incredible.

Pam, Co-Founder and Board of Directors, The Orion Fund

 

Many thanks to Jennie Berlekamp for her support of the TOF Film Project – we couldn’t have done it without you! Jennie is a long-time resident of Piedmont, CA., and has been a supporter of The Orion Fund since its inception.




Lizz



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Paula



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Kolya





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Ben





Ben is the Director of The Orion Fund Film Project. He has been hanging out with, interviewing, and filming three of our students. The hours of film have been edited into vignettes, and tell their stories. We are very pleased to have him as part of The Orion Fund, and look forward to sharing the videos with you this year.

Ben is a Bay Area native. He grew up in Piedmont, CA, and then graduated from the University of California, San Diego with a B.A. in Visual Arts and Film in 2008. In 2010, Ben embedded at the George Mark Children’s House, which provides for pediatric end of life care. There he followed the stories of three families and their children. The result is the movie, A New Way Home. The movie was submitted to the 501c3 Capturing Change on Camera, a nationwide competition sponsored by Tufts University and the National Boston Studios, to acknowledge “the most inspiring, motivating and creative videos of a youth, child, or family focused nonprofit organization”. Ben’s film won the competition in 2011.

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Kaitlin





Kaitlin grew up in Southern California and graduated from Orange County High School of the Arts. She moved to Berkeley, Ca. in 2008 to attend the University of California, Berkeley where she is currently finishing her B.A. in Interdisciplinary Studies with an Area of Concentration in Medical Anthropology and Disability Studies. Kaitlin was born with a very rare complex congenital heart defect called Truncus Arteriosus Type II that has resulted in five open-heart surgeries and one brain surgery. She became involved with the Orion Fund in 2010 as a grant recipient due to undiagnosed endocarditis, which resulted in emergency open heart surgery, followed by a brain aneurism and brain surgery during her freshman year. The Orion Fund assisted Kaitlin with living and medical expenses so she would be able to remain in school.

Kaitlin remained connected with The Orion Fund, and in 2011 joined The Orion Fund Film Project to help Ben Tuller with planning, interviews and filming. 2012 has given Kaitlin amazing opportunities. On top of her involvement with The Orion Fund Film Project, she was selected to write and perform an original monologue about her medical experiences in U.C. Berkeley’s production of The Vagina Monologues on the three- year anniversary of her fifth open-heart surgery. This summer she was selected to be a Ronald E. McNair Scholar which enabled her to spend it creating, implementing and presenting an original research project on the lives and experiences of women with complex congenital heart disease.

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