As part of a series of profiles of people doing great things for their communities, the Obama Foundation has released a video spotlighting the efforts of a patient and his wife who want to reimagine the fight against amyotrophic lateral sclerosis (ALS).
The Chicago couple, Brian Wallach and Sandra Abrevaya, founded a patient-led campaign this year called I AM ALS, which brings together patients, advocates, organizations, and researchers to drive collaboration, provide critical resources, and increase disease awareness with the ultimate aim of funding a cure.
Following its recent release, the video was viewed more than 1 million times in less than 24 hours. Former President Barack Obama tweeted about the video and the movement. During Obama’s 2008 campaign, Wallach was a political director and Abrevaya a communications director. They dated then married.
Then in 2017, when Wallach was 37, he got the devastating news: ALS. At the time, the couple had two daughters under age 3.
“Most people who get ALS, the average lifespan is two-to-five years,” Wallach, a former U.S. attorney, says in the video. “So, you don’t become an advocate because you’re simply consumed by trying to live your day-in-day-out life by trying to deal with the changes that confront you every day.
“And so our thought was, what if we could build something that would help give everyone in this fight that little bit of mental space so they could actually be empowered to help us accelerate this fight to the natural conclusion that we all want.”
After coming to terms with the diagnosis and vowing to fight back, the couple couldn’t understand why the disease wasn’t better funded or understood. They decided to create a patient-centric movement and research-funding model that could be used for all rare diseases.
“We are just like we were back in ’08, back in campaign mode,” Abrevaya, president and chief impact officer at Thrive Chicago, says in the video. “We spend our date nights editing website copy and coming up with awareness strategies.”
The two are using what they learned on the campaign trail, including how to organize. They enlisted the help of friends, many of them veterans from both sides of the political aisle, to help craft a plan that incorporates campaign tactics.
“The group of people we brought together have stood by us from the beginning,” Wallach said in a news release. “They have been there to augment our ideas and challenge the basic assumption that we can do things only one way. They are a reminder to me that the Obama ethos is what truly inspired us to begin this journey.”
Now in its fifth month, I AM ALS has grown to a community of 16,000. It also has helped garner $10 million in federal funding for ALS research, and raised more than $1 million in seed funding. It has created scientific and patient advisory councils, brought in multiple industry partners, and established relationships with patient advocates in ALS and other diseases. The expectation is that curing ALS will lead to cures for other disorders.
But for Wallach and Abrevaya, first things first.
“I fight for myself, my husband, our girls,” Abrevaya said. “I want a world where good triumphs over evil, where impossible just means it hasn’t been done yet. This campaign is about building a movement to change the world.”
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