Every revolution starts with a story
We started with the facts. People still don’t know what ALS is
A 2018 I AM ALS poll found that most Americans know little about ALS.
- More than 60% of Americans did not know that ALS is always fatal
- More than 95% of Americans could not name a single group, foundation or association involved in the effort to find cures for ALS
- More than 50% of Americans have no idea that the Ice Bucket Challenge raised money for ALS research
Test Your ALS Knowledge
Hear us. See us. Join us
I AM ALS was created for patients, by patients. Why is this so important? Because for too long those most impacted by ALS have not been at the table leading every facet of our efforts to cure ALS. When we change that fact, not only are we better equipped to serve patients, but we are forced to operate on the ALS clock and accelerate our race for cures. I AM ALS will continue to be driven by patients’ voices to advocate, empower, educate and amplify progress until the change we demand is realized — until ALS is no more.
My name is Brian. I started this crazy idea turned movement alongside my wife, Sandra. I was diagnosed with ALS in November 2017.
Movements always begin with a story. Our story is hope borne from recent scientific developments. Hope transformed into a movement by the dozens of partners, old and new, who share our unceasing drive to make change real for those living with ALS. Find out what drives our hope.
At I AM ALS, we built a single entry point to help connect patients and their loved ones to existing resources while delivering critical new tools to ensure care and support is there for every step on the ALS journey. Get the support you need.
Faster progress toward cures and better health advocacy require building a community in which everyone is empowered and has an integral role in leading the movement. Each of us can speed up our timeline toward cures. So, let’s get to work. Join us in taking action to end ALS.
ALS is a forgotten disease. Few know what it is and that it can affect anyone, anywhere, at any age. In order to make real, expeditious progress we must change that. It is up to us to bring ALS out of the shadows and teach others that taking action for cures can be as simple as telling a neighbor that ALS is deadly and impacts every community. Help rewrite the ALS story.
How we expand our impact
First, we build a model that can be replicated for every rare disease fight. I AM ALS has set out to build a movement that connects patients, caregivers, researchers, clinicians, foundations, corporations and the public in our efforts because we each have a part to play and are stronger when we work together. The tools and advocacy model developed by I AM ALS will be made available to other disease organizations to help them raise awareness, increase engagement, and transform and accelerate progress against their diseases.
Second, we already know that 1 in 15 adults in the developed world will be diagnosed with a neurological disease in their lifetimes. While some fight ALS, others fight Parkinson’s disease, Alzheimer’s disease, or multiple sclerosis. The reality is our diseases and, therefore, our efforts are all linked. The science is finally in a place where the question is not if we will find cures, but when. Few in the general public, however, know these facts. The time has come to unite our efforts to end the devastating impact of these diseases and garner support for our collective goals.