I AM ALS Marks First Anniversary of a Movement That Will Cure ALS
For Immediate Release: January 22, 2020
Media Contact: Theresa Garner, [email protected]
In just 365 days, group doubles ALS research funding for DoD program, took over Times Square, and partnered with leading organizations like the Chan Zuckerberg Initiative
WASHINGTON (January 22, 2019) — I AM ALS, a patient-led, patient-centric movement redefining what it means to combat disease, celebrates its one year anniversary today closing a year of significant progress in the fight against amyotrophic lateral sclerosis (ALS).
In just 12 months, I AM ALS has built a movement of more than 60,000 members and reached more than 40 million people with the support of new partners like the Chan Zuckerberg Initiative to empower, for the first time ever, a movement of advocates to activate and drive change in their own communities and across the country.
The year has included several major accomplishments. I AM ALS has:
- Led advocacy efforts resulting in the doubling of the Department of Defense ALS research funding (from $10 to $20 million), a directive from Congressional appropriators to the National Institutes of Health (NIH) to coordinate and report on ALS research priorities, and built from scratch a Congressional ALS Caucus with more than 100 Senate and House members
- Led a community effort to deliver a long-stalled FDA guidance document to improve ALS clinical trials
- Convened two dozen public and private ALS research funders who will deliver collaborative projects to speed research progress
- Launched an action hub providing easy access to specific engagement, awareness and advocacy steps anyone can take to make urgent progress to end ALS
- Aimed to unify the ALS, neurodegenerative and rare disease space by building partnerships with more than 35 organizations and starting a #CuresforAll campaign
- Featured on the TODAY Show, the front page of the Chicago Tribune, and was the focus of an Obama Foundation video that was shared by President Obama
“We began I AM ALS to answer the central question — how do we find a way to empower people who are living with ALS to be a part of finding the solution for their disease?” said Brian Wallach, ALS patient and co-founder of I AM ALS. “In our first year we were able to prove that the model we set out to achieve works. It is now a matter of scaling our impact in order to speed up our fight for treatments and cures and make hope real for the 1 in 300 worldwide who will receive an ALS diagnosis.”
In December, I AM ALS took over Times Square, bringing together hundreds of advocates in person and thousands online when the famed location’s twelve iconic billboards simultaneously featured a Cures for All message: if we cure one neurodegenerative disease, we will unlock cures for all. The campaign turned thousands from passive consumers to active participants in the fight against neurodegenerative and rare diseases by asking people to honor loved ones battling disease by answering a simple prompt, “who will you change the world for?” Collectively, participants reached more than 8 million people with their messages.
“The ALS fight is at a pivotal point,” said Danielle Carnival, I AM ALS CEO. “There are more promising discoveries taking place than ever before and by providing a way for every person to make a difference in this fight — by radically raising awareness, improving advocacy, increasing research investment and optimizing systems for therapy development — I AM ALS aims to get real and viable treatments in the hands of ALS patients urgently.”
In 2020, I AM ALS plans to:
- Launch a comprehensive navigation program servicing patients and their families through every step of the ALS journey;
- Push on legislative solutions for access to promising therapies;
- Lead an effort to increase research investment by $40 million;
- Convene an ALS collaborative to bring together disparate ALS groups and invest in transformative research; and
- Build bridges to other neurodegenerative and rare disease fights through the growth of a #CuresforAll campaign.
To find out how you can be a part of a movement to cure ALS and unlock cures for all visit iamals.org.
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 at 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 2 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 cures within reach.