CHICAGO--(BUSINESS WIRE)--Yesterday, the Obama Foundation released a video highlighting the efforts of Brian Wallach and Sandra Abrevaya to combat Amyotrophic Lateral Sclerosis (ALS) as part of a new movement called, I AM ALS. Viewed more than a million times in less than 24 hours, President Barack Obama has since tweeted about the video and movement.
The video, which can be viewed online here, is part of the Foundation’s series of profiles of active citizens who are working to make positive change in their communities. When Brian, who along with Sandra are alumni of the Obama Campaign and White House, was diagnosed with ALS in November 2017 and given six months to live, the couple decided that the only path forward was to fight for their two young daughters and so many others.
They began to reimagine the fight against ALS, which meant connecting the insights of researchers with deep experience in the field and the organizing tactics imported from successful political campaigns. As part of their vision, Brian and Sandra began reaching out to friends, many of whom were political campaign veterans from both sides of the aisle, to design an organization that employed those campaign tactics in the fight against ALS.
“The group of people we brought together have stood by us from the beginning. They have been there to augment our ideas and challenge the basic assumption that we can do things only one way, which is exactly what we need in this fight,” Wallach says. “They are a reminder to me that the Obama ethos is what truly inspired us to begin this journey. If you believe with us, if you hope with us, if you dream with us, we can actually make this real.”
I AM ALS has launched a campaign that seeks to make clear to us all that no matter if we have a direct connection to ALS, we are a part of changing a disease that for too long has been in the shadows and which, when cured, can help unlock critical breakthroughs for the fights against Alzheimer’s, Parkinson’s, Multiple Sclerosis and beyond. Through this campaign, I AM ALS aims to bring millions of voices together to stand in unison and state, I AM ALS, today and every day until there is a cure.
“I fight for myself, my husband, our girls. I want a world where good triumphs over evil. Where impossible just means it hasn’t been done yet,” Abrevaya says. “This campaign is about building a movement to change the world. In just five months, tens of thousands have joined in this fight for the first time. This campaign will invite the world to see us, hear us, act with us, and ultimately end ALS with us.”
In the first five months since launch, I AM ALS has grown to a community of 16,000, helped advance $10 million in additional federal funding for ALS research, established scientific and patient advisory councils, brought in multiple industry partners, raised over 1 million dollars in seed funding, and built relationships with leading patient advocates in the ALS, Parkinson’s, Melanoma, Duchene’s Muscular Dystrophy, and Multiple Sclerosis fights.
While I AM ALS seeks to find a cure for ALS, there is a deep understanding in the medical community that curing ALS will unlock cures for Alzheimer’s, Parkinson’s, Multiple Sclerosis, Frontotemporal Dementia, and beyond.
“I AM ALS is a patient-led, patient-centric movement that seeks to empower the ALS community to take charge of their fight, to help accelerate the search for a cure, and, in doing so, create a model as to how we can combat rare diseases, not just ALS, but many across the entire spectrum,” says Brian. “We are tremendously fortunate to have so many talented people in this fight with us and with their help, we will find a cure.”
About I AM ALS
Founded in 2019 by Brian Wallach and his wife, Sandra Abrevaya, I AM ALS was born out of their desire to change the future for Brian and the thousands of other ALS patients in the world. I AM ALS brings together patients, advocates, organizations and scientists to deliver critical and innovative resources for patients, empower and mobilize patients and their networks to lead the fight for a cure, and transform the public understanding of ALS with a goal of flooding the research pipeline with new, lifesaving drugs. A cure is possible ... if we work together to re-imagine the fight against ALS. Learn more here: https://iamals.org
ALS is a disease that attacks cells in the body that control movement. It makes the brain stop talking to the muscles, causing increased paralysis over time. Ultimately, ALS patients become prisoners within their own bodies, unable to eat, breathe, or move on their own. Their mind, however, often remains sharp so they are aware of what’s happening to them. Today, ALS is always fatal and patients typically live for 3 to 5 years after diagnosis. That’s because scientists have yet to identify a cure for ALS. The recent acceleration of research has ensured that this will change. It is now not a question of if, but when there will be a significant treatment breakthrough that brings a cure within reach.