“No Ordinary Campaign” at Chicago International Film Festival Chronicles ALS Research
The documentary “No Ordinary Campaign,” directed by Michael Burke, focuses on the fight for more funding and help for patients suffering from ALS. The focal point of this fight for life is ALS sufferer Brian Wallach and his wife. Brian, a former Assistant District Attorney, met his wife. Sandra Abrevaya while working on Obama’s 2008 presidential campaign.
In this fight however, after his diagnosis at only 37, the stakes are literally life and death—for Brian and for all other sufferers of diseases like ALS. Alzheimer’s and Parkinson’s disease. With their background in politics and their friends in high places (Obama speaks in the documentary and the Mark Zuckerberg/Priscilla Chan Initiative underwrote) the couple spearheads efforts to increase awareness and funding for ALS research.
The Wallachs lead the charge in personifying “courage in impossible situations.” They use their organizational skills to unite patients and their families, nationwide, and work to raise funds, testifying before Congress for increased funding to find a cure for these neurological diseases because “hope alone does not get you a cure.” Founding iamalsorg.com is a first step to unifying the many disparate voices crying for help.
One of the impediments to care turns out to be the FDA itself, which had a 6 month wait time to apply for social security disability benefits, when the life expectancy of many ALS patients is, basically, that short. It made no sense, nor did the clinical trial of a promising new drug (AMX0035) that let patients take it, but only for a short time. Patients who were experiencing progress were cut off after the clinical trial period, for no discernible good reason.
Brian and Sandra are shown making an emotional appeal to Congress in which they said, “Do not let another generation of patients die in pursuit of the perfect. Instead, let them be the first generation to live.”
The efforts of the consortium including legislative help from Senators Dick Durbin and Lisa Murkowski, leads to success in the Accelerated Access to ALS bill being signed by President Biden in June (2022) and approval for the use of AMX0035. The group also raised $80 million in funding in 2 years, much more than had ever previously been devoted to research for a cure.
With patients (1 in 300 will get ALS) pleading for help before the Congressional committee, Representative Rosa DeLaura of Rhode Island said, “I promise you we will fight for your survival. Godspeed.”
This was the World Premiere of the documentary from Redtail Media. Katie Couric was one of the executive producers.