ALS Ice Bucket Challenge Progress
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We are Lou- Meet the team of "Face ALS" May 1, 2014- Burbank, California
"I really didn’t know what ALS was until my dear friend Jon Huntley was diagnosed with it in 2012," shared Julia Swift. "I then started to realize how many people there were, in my work and in my personal life, that had been touched by this so-called 'rare' disease." “Julia and I met at USC film school twenty two years ago,” shared Huntley. “We quickly became friends taking many classes together. We went to each other’s weddings. Our families became friends celebrating our children's birthdays.” "We were fast friends because we had so much in common," said Swift. "We were both eager to start our families, our careers and our lives. Somehow we knew we didn't have time to waste. We even talked faster than everyone else! I was immediately drawn to his work because his themes always surrounded how people treat each other and how much we effect the lives of everyone around us -- often without even realizing the power we have to build people up or tear them down," "When we graduated, Jon came up with the idea of promising each other that whenever we talked from then on -- we would not ask how our careers were going-- we would be friends who only cared about what really mattered," added Swift. “When I was diagnosed, Julia started visiting me once a week to watch movies and talk about writing and our struggles,” said Huntley. “Her husband, Andrew would join us on occasion.“ "I found myself looking forward to my Friday's with Jon not only because I got to spend time with one of my favorite people, because when we are together we get to be those idealistic artists we were twenty-two years ago," said Swift. Jon’s family and supporters formed a team for the Los Angeles County Walk to Defeat ALS. “The Happy Huntleys” made the news when they raised over $58,000 in October 2013, the highest fundraising Walk to Defeat ALS team in the country in support of the mission of The ALS Association Golden West Chapter. But Jon knew that he wanted to do more, to raise awareness and deepen the public’s understanding of this devastating disease. “It all started as I was approaching the one year anniversary of the resignation of my CFO position,” shared Huntley. “I asked my friends what I should do and they suggested a public awareness/advocacy PSA project.” “I asked Julia and Andrew to produce because I knew they would give it the same passion they give me with their friendship -They work as an amazing team,” shared Huntley. “Julia had an amazing career as a television writer and Andrew's as an independent producer are invaluable assets. "Our love for film and our training at USC in filmmaking has inspired us to take Jon's challenges and make something positive," said Swift. "This new shared goal is a path that keeps us moving forward, and an excuse to spend more time with each other," said Swift. For this project, Andrew is managing production and with Julia providing creative guidance and taking the role of interviewer. “They are very generous people,” shared Huntley. “My life is truly made better because of them.” The first phase of the Face ALS public awareness project focuses on six PSAs about ALS, which include statistics, facts, quotes, along with pictures and inspiring graphics of people with ALS. The team is working to raise the funding for a feature-length documentary, to be directed and edited by Huntley. “The idea for the film was born out of the fascinating people living with ALS who signed up to participate.” Any and all proceeds after production, marketing and distribution expenses will be donated to benefit the ALS Association The film will include interviews with Huntley and several other people with ALS, their relatives and friends, discussing the impact of the disease on their lives. Huntley has used social media to connect with other people living with ALS and ask them to participate in the Face ALS project. “Face ALS will unite all of our ALS stories to inform others about ALS and the need to fund research for cures,” commented Huntley. “It is only together that we will defeat ALS, and there is no better example of collaboration, dedication and determination in the fight against ALS than that which we see from Jon, his family and their community of ‘Happy Huntleys,’” said Fred Fisher, President and CEO of The ALS Association Golden West Chapter. “Jon’s Face ALS project is an essential element in our efforts to increase awareness and secure the resources necessary to advance our global research program, our care services program and our public policy initiatives – all of which play key roles in the search for an effective treatment and cure,” Fisher added. “As a result of increased awareness and support, The ALS Association can continue to fund groundbreaking scientific and therapeutic discoveries that enable a better understanding of the causes of ALS, developing new treatments for ALS, and ultimately, finding a cure for this devastating disease.” "We are both energized by our work on FACE ALS in a way that feels like a lightning bolt to our soul," said Swift. "We are privileged to tell people's stories and let everyone know that - when they share their joy, fear, anger and hope with us-they become a crucial partner in the FACE ALS journey." Huntley admits the challenges with this project go outside typical film production, “My ALS complicates matters. My team and I are committed to finishing this film regardless of my health.” “This is my passion project,” said Huntley. “Even though I am struggling with my strength and can’t hold my head up for more than one minute while typing, the support of the ALS community motivates me to fight through pain and weakness. If people could walk away with one thing from Face ALS, I hope it would be that a cure IS out there, if we can fund research, medicine and technology.” To learn more about the project, please visit their website- www.FaceALS.com
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We are Lou- Meet the team of "Face ALS" May 1, 2014- Burbank, California
"I really didn’t know what ALS was until my dear friend Jon Huntley was diagnosed with it in 2012," shared Julia Swift. "I then started to realize how many people there were, in my work and in my personal life, that had been touched by this so-called 'rare' disease." “Julia and I met at USC film school twenty two years ago,” shared Huntley. “We quickly became friends taking many classes together. We went to each other’s weddings. Our families became friends celebrating our children's birthdays.” "We were fast friends because we had so much in common," said Swift. "We were both eager to start our families, our careers and our lives. Somehow we knew we didn't have time to waste. We even talked faster than everyone else! I was immediately drawn to his work because his themes always surrounded how people treat each other and how much we effect the lives of everyone around us -- often without even realizing the power we have to build people up or tear them down," "When we graduated, Jon came up with the idea of promising each other that whenever we talked from then on -- we would not ask how our careers were going-- we would be friends who only cared about what really mattered," added Swift. “When I was diagnosed, Julia started visiting me once a week to watch movies and talk about writing and our struggles,” said Huntley. “Her husband, Andrew would join us on occasion.“ "I found myself looking forward to my Friday's with Jon not only because I got to spend time with one of my favorite people, because when we are together we get to be those idealistic artists we were twenty-two years ago," said Swift. Jon’s family and supporters formed a team for the Los Angeles County Walk to Defeat ALS. “The Happy Huntleys” made the news when they raised over $58,000 in October 2013, the highest fundraising Walk to Defeat ALS team in the country in support of the mission of The ALS Association Golden West Chapter. But Jon knew that he wanted to do more, to raise awareness and deepen the public’s understanding of this devastating disease. “It all started as I was approaching the one year anniversary of the resignation of my CFO position,” shared Huntley. “I asked my friends what I should do and they suggested a public awareness/advocacy PSA project.” “I asked Julia and Andrew to produce because I knew they would give it the same passion they give me with their friendship -They work as an amazing team,” shared Huntley. “Julia had an amazing career as a television writer and Andrew's as an independent producer are invaluable assets. "Our love for film and our training at USC in filmmaking has inspired us to take Jon's challenges and make something positive," said Swift. "This new shared goal is a path that keeps us moving forward, and an excuse to spend more time with each other," said Swift. For this project, Andrew is managing production and with Julia providing creative guidance and taking the role of interviewer. “They are very generous people,” shared Huntley. “My life is truly made better because of them.” The first phase of the Face ALS public awareness project focuses on six PSAs about ALS, which include statistics, facts, quotes, along with pictures and inspiring graphics of people with ALS. The team is working to raise the funding for a feature-length documentary, to be directed and edited by Huntley. “The idea for the film was born out of the fascinating people living with ALS who signed up to participate.” Any and all proceeds after production, marketing and distribution expenses will be donated to benefit the ALS Association The film will include interviews with Huntley and several other people with ALS, their relatives and friends, discussing the impact of the disease on their lives. Huntley has used social media to connect with other people living with ALS and ask them to participate in the Face ALS project. “Face ALS will unite all of our ALS stories to inform others about ALS and the need to fund research for cures,” commented Huntley. “It is only together that we will defeat ALS, and there is no better example of collaboration, dedication and determination in the fight against ALS than that which we see from Jon, his family and their community of ‘Happy Huntleys,’” said Fred Fisher, President and CEO of The ALS Association Golden West Chapter. “Jon’s Face ALS project is an essential element in our efforts to increase awareness and secure the resources necessary to advance our global research program, our care services program and our public policy initiatives – all of which play key roles in the search for an effective treatment and cure,” Fisher added. “As a result of increased awareness and support, The ALS Association can continue to fund groundbreaking scientific and therapeutic discoveries that enable a better understanding of the causes of ALS, developing new treatments for ALS, and ultimately, finding a cure for this devastating disease.” "We are both energized by our work on FACE ALS in a way that feels like a lightning bolt to our soul," said Swift. "We are privileged to tell people's stories and let everyone know that - when they share their joy, fear, anger and hope with us-they become a crucial partner in the FACE ALS journey." Huntley admits the challenges with this project go outside typical film production, “My ALS complicates matters. My team and I are committed to finishing this film regardless of my health.” “This is my passion project,” said Huntley. “Even though I am struggling with my strength and can’t hold my head up for more than one minute while typing, the support of the ALS community motivates me to fight through pain and weakness. If people could walk away with one thing from Face ALS, I hope it would be that a cure IS out there, if we can fund research, medicine and technology.” To learn more about the project, please visit their website- www.FaceALS.com
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