“Face ALS” Raises Awareness And Funds For Documentary Film

Photo Courtesy of Jon Huntley.

The Happy Huntleys, working with The ALS Association, have kicked off a campaign to raise $20,000 by Friday, April 25, to fund a documentary film about people living with ALS (Amyotrophic lateral sclerosis) and the urgent need for a cure, called Face ALS.

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The Face ALS project includes the feature-length documentary due to be released in March 2015 and six Public Service Announcements (PSAs) debuting in May 2014. Burbank resident Jon Huntley has been hard at work directing and editing the PSAs to help raise awareness and encourage funding for the documentary.

Photo Courtesy of Jon Huntley.
Jon Huntley in an undated photo. (Photo Courtesy of Jon Huntley)

Huntley was diagnosed with ALS, a progressively debilitating neurological disorder that affects motor and muscle control, in September of 2012. His family and supporters, The Happy Huntleys, made the news when they raised over $58,000 for ALS research in October 2013.

The Face ALS PSAs are short films and focus on six people living with ALS, also known as PALS, and their families and friends.

“This is my passion project,” said Huntley. “I have been working so hard on the Face ALS PSAs.”

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Two of the six planned PSAs have been completed and Huntley says he is “so happy with how they look and feel.”

“However, I am struggling with my strength,” he added. “I can’t hold my head up for more than one minute while typing. That said, my fellow PALS’ faith motivates me to fight through pain and weakness.”

Photo Courtesy of Jon Huntley.
Photo Courtesy of Jon Huntley.

The PSAs include “statistics, facts and quotes about ALS, along with pictures and inspiring graphics of People with ALS,” explained Huntley.

The documentary film will be directed and edited by Huntley. The feature is being produced by a select group of advisors including The ALS Association and Andrew Swift, formerly of E! True Hollywood Stories.

The film will include interviews with Huntley and several other PALS, their relatives and friends, discussing the impact of ALS 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. The Happy Huntleys’ website has had more than 1400 page views including over 700 unique visitors since the Face ALS project began.

Photo Courtesy of Jon Huntley.
Photo Courtesy of Jon Huntley.

A two minute teaser is available to view on the website, which also includes information on ways to support the documentary production. People can purchase the Face ALS DVD or a crew tee and even get a listing in the end credits, for varying levels of financial support.

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.

Photo Courtesy of Jon Huntley.
Photo Courtesy of Jon Huntley.

“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.”

Any and all proceeds after production, marketing and distribution expenses will be donated to benefit the ALS Association, said Huntley, who encourages people to share the campaign on social media platforms such as Facebook and Twitter using the hashtag #faceals.

Huntley admits the challenges with this project go outside typical film production, “My ALS complicates matters. My producers and I are committed to finishing this film regardless of my health.”

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  1. I wish that we would have known about this project a bit earlier. God bless you all. We too have been working on garnering awareness about ALS. Our dearest friend Nora Perez was diagnosed in November 2011. Since then, it has been an uphill battle of fundraising, awareness, coping, and making her feel all the special that she truly is, in spite of her disease. If you can, please watch a video we produced for her in early 2013. Unfortunately, her physical condition has deteriorated rapidly since then. Thank you for the work you are doing, and again Bless you!


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