There are many ways, both big and small, to raise ALS awareness. Some people have used their filmmaking or public speaking talents to craft compelling stories about those living with this disease. From TED talks to award-winning documentaries, these videos inspire, educate, challenge and entertain viewers, while celebrating the lives of people with ALS and the contributions they have made.
Below are a few must see videos and films about living with ALS, many of them about people served by the Golden West Chapter, to watch and share with family and friends.
Running for Jim
The film tells the inspiring story of record-breaking San Francisco University High School cross country coach Jim Tracy, his battle with ALS, and his 2010 championship team that brought his story to international attention.
You can rent and stream Running for Jim on the film’s website, runningforjim.com.
Jason Becker: Not Dead Yet
Jason Becker was a rock star—literally—by the time he was 19 years old. The heavy metal guitarist was then diagnosed with ALS. He was told that he would never make music again, and that he would likely not live to see his 25th birthday. Today he is 47 years old and is still making music, composing songs on a computer using his eyes. Not Dead Yet, made in 2012, looks at Becker’s life both before and after his diagnosis.
Jason Becker: Not Dead Yet is available on DVD, iTunes, XBox 360 and Playstation through the website, jasonbeckermovie.com.
This award-winning documentary tells the story of Scott Lew, a screenwriter afflicted with ALS who, though nearly full-paralyzed, continues to follow his passion for writing feature films. Scott maintains his voice in the world through his scripts, giving added meaning to the expression of “living to write.”
You can watch Jujitsu-ing Reality on the filmmaker's vimeo channel.
Getting Up: The TEMPT ONE Story
A powerful documentary about a graffiti artist becomes paralyzed from ALS who is able to create once again using a new technology that reads eye movements. The device that was created to help him, called The Eye Writer was named one of the top inventions of the year by TIME magazine.
You can watch Getting Up on Reelhouse.
Watch this documentary feature created by Jon Huntley, who has been living with ALS since 2012, and learn about ALS from 34 people who are themselves facing it, in their own words.
You can watch Face ALS on the Happy Huntley’s website - thehappyhuntleys.com
Just a few weeks after being diagnosed with ALS, Steve Gleason learned that his wife was expecting their first child. In response, the former NFL player made a video journal for his unborn son. The project expanded into a full-length documentary covering five years of his journey with ALS, showing his adventures as he chooses to live life to its fullest as he continues to do.
Gleason is available to buy on iTunes or on Amazon, where it can be seen for no additional cost if you have an Amazon Prime membership. You can learn more at teamgleason.org.
I Am Breathing
Neil Platt was diagnosed with ALS in his early 30s. Neil had familial ALS; his father had passed away from the disease about a decade earlier, and now Neil had his own young son who may or may not have inherited the ALS gene. This documentary follows the last months of Neil’s life while looking back at his previous 34 years, narrated partly by himself through his blog.
You can rent and stream I Am Breathing on the film’s website, iambreathing.com.
Patrick O’Brien, a filmmaker and DJ who also goes by the stage name DJ Transfatty, was diagnosed with ALS at age 30. Turning his camera on himself, he became the director and star of his own film, documenting the next 10 years as he coped with the disease, fought depression, wrote poetry, fell in love and fathered a son. The resulting film, which he edited using eye movements and narrated with an electronic speech generator, is as funny as it is inspiring.
You can rent or buy the movie on one of several different online platforms, a full list of which can be found on the website, transfattylives.com.
Breadth of Hope
Breadth of Hope is a portrait of three families impacted by ALS. Craig Fox, Bill Hassel and Carolyn Shimek all live in the same town, and all three were diagnosed with ALS. This film looks at how they each cope, and how they each find hope in the midst of their circumstances.
You can buy the film on DVD through the website, breadthofhope.com.
So Much So Fast
When Stephen Heywood was diagnosed with ALS, he and his brother Jamie became obsessed with finding a cure. He establishes a foundation and raises millions of dollars to fight the disease. Meanwhile, Stephen responds to his diagnosis by getting married, having a child and rebuilding two different houses. So Much So Fast follows the brothers over the course of five years as they both try to make the most of their lives.
The documentary can be bought on DVD or online through the West City Films website.
Ted Talks: The big idea my brother inspired
This TED talk is by Jamie Heywood from So Much So Fast. Filmed a few years after his brother died, it shows one of the fruits of his efforts: a free website, PatientsLikeMe, where participants share their experiences and health data to track their progress, and help others resulting in a pool of data that can be used to test and evaluate treatment options. The talk can be watched for free on the TED website.
Ted Talks: Meet the mom who started the Ice Bucket Challenge
Nancy Frates tells the story of her son Peter’s ALS diagnosis—and his determination to make a difference in the fight against the disease—which eventually led to the global phenomenon The ALS Ice Bucket Challenge that raised $220 million worldwide and brought unprecedented awareness to the cause.
You can watch it online, for free, on the TED website.
Ted Talks: ALS hasn’t won – ALS ONE!
Kevin Gosnell talks about how, after his ALS diagnosis, he was able to gather researchers and advocates together locally in Massachusetts to organize and combine their efforts, speeding up the path towards finding a cure by 2020 and improving care now for people living with ALS
You can watch the talk for free on YouTube.