Brian Wallach will forever remember the day of August 14, 2017, for the rest of his life. It was the day that his 2-week-old newborn returned home from the hospital with his wife, Sandra Abrevaya. It was also the day that he heard the words “ALS” from his doctor for the very first time. Since then, Brian and Sandra have cocreated I AM ALS, an organization that he says has an ethos of empowerment where everyone who is involved has a chance to make change, and believe that their voice matters.
The Public Recognition Award is awarded to public figures, celebrities, or entities that have made extraordinary contributions toward increasing public awareness of muscle and nerve disorders. Since I AM ALS was founded, it has built partnerships with more than 30 organizations, testified three times before Congress, pushed long-awaited FDA ALS clinical trial guidance, built a 100 member congressional caucus, and delivered more than $83 million worth of federal research funding for ALS.
The I AM ALS community has taken over Chicago’s Miracle Mile, was integral in the creation of MLB’s Lou Gehrig Day and took over Times Square, asking for the world to join I AM ALS in the fight to end the disease, one of Brian’s proudest achievements. Because of the extraordinary work that Brian Wallach has spearheaded, AANEM is pleased to award him with the 2021 Public Recognition Award.
“Our goal as patients is to slow the disease and to be around when there are actual curative therapies,” Brian relays. “And I would like the world to know that the curative treatments are not far away. Incredibly promising therapies are already in the pipeline.”
He recalls the first moment of his own diagnosis, remembering the words crashing down around the office and all of the questions he had, trying desperately to make sense of the diagnosis. He questioned being too young to have ALS, and wondered how it was possible without a family history of the disease. He was officially diagnosed 3 months later in November at the age of 37. “There is not yet a test to diagnose someone with ALS,” Brian states. “Instead, it is a diagnosis that is reached when all other options are exhausted–what doctors call a diagnosis by exclusion.”
Brian expressed his willingness to lean in to try new therapies to fight the terminal disease. He has since seen close to 10 ALS clinicians, and tried more than half a dozen treatments. Things like genetic testing to explore off-labeled therapies were not readily made available or even suggested to him until he asked persistently.
“It’s been a very challenging medical journey because traditionally ALS patients are treated as if it’s palliative care,” he reflects. “As a medical community, as a policy community, as a nation, we need to all lean in to support patients’ interests in trying new therapies and taking risks that they are comfortable with—patients know what’s behind door number two.”
Prior to founding the organization with his wife, Sandra, Brian received his BA from Yale University and his JD from Georgetown University Law Center. He has served in a variety of positions as an attorney including Senior Vetting Counsel at the White House, an Assistant United States Attorney, and Political Director in the 2008 election.
He is proud of the patient-led community that he has founded which provides critical support and resources to patients, caregivers and loved ones, what he cites as his biggest accomplishment. In his free time, he enjoys meditation, riding his stationary bike, telling bad dad jokes and of course, playing with his two girls.
“All gratitude goes to my devoted wife, Sandra,” he expresses. “My daughters are my two reasons for inspiration. When I was diagnosed, I was told to go home and get my affairs in order. Instead, we fought and we discovered that there are tens of thousands of others who are also ready to fight.”
Brian Wallach hopes to see the healthcare system realize that for ALS patients having the chance to slow progression is everything right now. He continues to fight for treatments and cures 4 years after being given 6 months to live, not only for himself, but for the entire ALS community.
“When you see someone with ALS, never tell them that their life is over. Instead tell them that they have a difficult path in front of them, and that you are there to work with them and support them every step of the way until we have cures.”
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Brian Wallach will be honored with the Public Recognition Award at the upcoming annual meeting in Aurora, Colorado. For more information on his organization, visit iamals.org