SXSW: Fighting for ALS Care in "No Ordinary Campaign"

by Abe Friedtanzer

There are many diseases and medical conditions that may be known by name to a large percentage of the public without there being any true understanding of what they are. One of the most prominent is ALS, or amyotrophic lateral sclerosis, a neurodegenerative disease with an unpromising life expectancy for those diagnosed. As the stirring new documentary No Ordinary Campaign explores, there is much that can be done to combat ALS, but there are important changes required within the system to help offer hope to those who are currently facing a death sentence.

At the center of No Ordinary Campaign is Brian Wallach, who met his wife Sandra while working on President Barack Obama’s campaign and was diagnosed with ALS at age thirty-seven...

His experience in politics compelled him to start a nonprofit called I AM ALS which brings together patients and their advocates to work to educate others about what they are going through and to move the government to provide urgent assistance. Though the famed Ice Bucket Challenge was successful in garnering sizable funds at the time, the hope is to provide a similarly large annual allotment that can fund continued and transformational research.

It’s both fascinating and frustrating to see the contradictions that exist in ALS treatment. Some doctors who have worked for years on ALS admit they have never met patients with the disease, and clinical trials often end suddenly, cutting patients off from critical drugs even if they’re working. The best way that it’s put is that science has reached a stage where this could be the first generation of ALS survivors, but the system is not letting it happen. Another key concept is that the pursuit of the perfect is getting in the way of extending people’s lives by even a few months thanks to a stalling in FDA approval of potentially revolutionary treatments.

Image of Brian and Sandra via the film's official website 

This documentary allows Brian and others with ALS to speak for themselves while also showing the difficulty of doing so; the disease erodes physical capabilities. A particularly moving moment finds Brian testifying and Sandra loudly and boldly repeating his words, showcasing the toll the disease takes on those it afflicts. This film can be a difficult watch, particularly for those who have lost friends or family to ALS, but it also takes a productive, inspiring approach, demonstrating the strength of those who are determined to set others up for a more promising fate.  Like Brian and his nonprofit, this film is another important way to blast out the message that things should and can change for the better. B+