What would you do if, at 37 with your entire life ahead of you – newly married, a new parent, career on the way up – you received a diagnosis that essentially gave you only years to live? Most people would probably break down, terrified, angry, unable to see a way forward. Brian Wallach and his wife Sandra Abrevaya, who met and fell in love during Barack Obama’s 2008 Presidential Campaign, faced that exact scenario when Wallach was diagnosed with ALS – more commonly known as Lou Gehrig’s Disease – at 37, and was told that there was no cure and he only had a handful of years left to live. But, unlike most people, Wallach and Abrevaya had a background in organizing – and knowledge that in order to change the status quo (in this case, that an ALS diagnosis means certain death), they would have to set about forcing those in power to take notice.
No Ordinary Campaign is a new documentary that not only teaches the viewer about ALS – both the cost of the disease on those afflicted with it and the promising new treatments that are slowly emerging – but also informs the audience just what needs to be done to help ensure that research is adequately funded to allow those diagnosed a fighting chance. ALS, which many people might recognize as the disease behind the viral Ice Bucket Challenge from several years back (although, recent polling suggested that only half of those who participated actually knew what it was raising money for), is the only disease with a 0% survival rate. Even the most complex cancers have minute survival percentages. But ALS? A diagnosis means certain death. Wallach and Abrevaya were not content to simply accept Wallach’s per-ordained fate and set about lobbying Washington DC heavyweights in the hope of increasing government funding for research.
While the film does go through the ins and outs of lobbying for increased research funding (including the various Senate hearings required to begin to make inroads – it turns out this is a topic that even the most divided of Congresses can agree on), the film also carefully lays out the losses that come with an ALS diagnosis. From the afflicted individual’s slow loss of physical functions (ALS causes the motor neurons within the body to wither and die, meaning that patients eventually lose muscle function, leading to paralysis) to the losses families face as their loved one succumbs to the disease, the film is clear that this isn’t a disease that only impacts the few – it impacts every person within the life of one who is diagnosed. But it’s also clear that we shouldn’t feel sorry for these individuals – especially not Wallach – as they are doing all they can to fight against their diagnosis, push for greater funding for research, and try to gain access to trials that have shown positive impacts in the past (and that were often shut down far too soon to truly be of help to those involved – another area Wallach and his team are trying to make inroads within, ensuring greater access to studies and keeping those trials running when there are promising results).
As of now, ALS is still a death sentence. But films like No Ordinary Campaign will bring greater light to the disease and hopefully, along with that knowledge, greater awareness and funding for treatment. As Wallach says within the film, it’s absolutely insane that in this day and age, we have a disease – that has been known since the early 20th century – that has no accepted treatment. With the campaigning of Wallach and his team of lobbyists, ALS is better positioned than ever before to receive the attention it has long needed. No Ordinary Campaign certainly opened my eyes to what can be done to ensure that future generations don’t have to look on ALS as a death sentence – it’s a compelling, emotionally stirring, and fact-filled film that will hopefully open up the eyes of others once it achieves a wide release.
No Ordinary Campaign was screened at the 58th Annual Chicago Film Festival.
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