I AM ALS

Brian Wallach is an attorney and ALS patient. In the aftermath of his diagnosis in November 2017, he and his wife Sandra Abrevaya founded I AM ALS, a patient-led, patient-centric movement to lead the fight for a cure to the disease. Wallach is also an associate at the law firm Skadden, Arps, Slate, Meagher & Flom LLP. From 2014 to 2018, he served as an Assistant United States Attorney in the Northern District of Illinois. From 2011 to 2013, he was Senior Vetting Counsel in the Obama White House. He met his wife while working on the Obama campaign in 2008. They have two young daughters.

We are committed to empowering patients to lead the fight against neurodegenerative disease, giving them the tools to speed treatments and cures for ALS and beyond. I AM ALS activates patients to advocate for change, provides a patient navigation program to enable access to critical resources, and transforms public understanding, to unite the ALS community in driving research faster and better supporting people living with ALS.

 I AM ALS elevates humanity by showing that with hope, love, support, urgency and collaboration, we can make the impossible real by curing ALS. ALS’s speed and relentlessness makes it the perfect test case to develop drugs to cure Alzheimer’s Disease, Parkinson’s Disease, and beyond. We are committed to sharing our novel tools and learnings for use in the fights against neurodegenerative and rare diseases. Because we all win when we all fight, and when we all fight we will have cures for all.

Brian and I AM ALS are building a movement that empowers patients to lead the fight to end a disease that afflicts 1 in 300 people worldwide and has had no meaningful treatments in nearly 150 years. 5,000 Americans are diagnosed each year and nearly 500,000 are living with ALS throughout the world. Military veterans are twice as likely to be diagnosed. 

ALS can affect anyone. It is a disease that attacks cells in the body that control movement. The brain stops talking to the muscles, causing paralysis over time. Patients become prisoners within their own bodies, unable to eat, breathe, or move. Their mind remains sharp so they are aware of what’s happening to them.

Despite links to Alzheimer’s, Parkinson’s and beyond over 60% of Americans know nothing about ALS. By comparison only 32% know nothing about Alzheimer’s.

Today, ALS is always fatal and patients typically live for 3 to 5 years. Scientists have yet to identify cures for ALS, but the recent acceleration of research ensures this will change. It’s not a question of if, but when there will be a significant treatment breakthrough that brings cures within reach. We aim to make “when” as soon as possible.

I AM ALS is translating the principles of community organizing and power that have built successful political campaigns and social movements into a model of movement building in the rare disease advocacy space for the first time ever. We are engaging those both within and outside of the community to catalyze the fight against ALS. The genesis of Brian and Sandra’s movement was profiled in June 2020 by WIRED magazine. 

Our model is built on four pillars: collaboration, resources, engagement, and awareness. I AM ALS delivers critical resources directly to patients through our patient navigation program, empowers and mobilizes patients and their networks to advocate for treatments and systems change, and transforms the public understanding of ALS. We do this to dramatically increase research funding to speed treatments and cures.

The I AM ALS model is built to accelerate the time it takes to make this breakthrough real. The pillars of the model were selected after extensive data analysis of the existing ALS fight and the most successful fundraising and community building efforts in the last half-dozen years. The result is a groundbreaking patient-led, patient-centric model that will reimagine and finally after 150 years win the fight against ALS.

I AM ALS serves a diverse community of people who have been affected by the disease and are seeking a way to empower themselves to change outcomes for everyone living with ALS. 

To understand community needs and engage them in the fight, I AM ALS has formed a Community Advisory Committee and set of subject-specific teams run by more than 70 patients, caregivers, surviving caregivers, and loved ones who inform and fuel every aspect of what we do as an organization. This enables us to authentically bring the patient and caregiver voice to every aspect of our work. The members provide tremendous capacity, acting as fierce advocates and connections to other parts of the ALS and related disease communities. 

These now-community leaders have worked with us to build transformative tools for every facet of the ALS community, bringing the patient voice to, for example, therapy development and trial design in a true and previously unthinkable partnership. 

These community members have become mentors for dozens of others and have told us repeatedly that their work on I AM ALS gives them a sense of purpose and hope which had been destroyed by the ALS diagnosis.

Brian launched I AM ALS because lack of public awareness was holding back progress for treatments and cures. ALS is part of a family of neurodegenerative diseases that affect millions of people globally. If a breakthrough is made in ALS, it will provide clues on how to treat and cure Alzheimer’s Disease, Parkinson’s Disease, multiple sclerosis, and more. I AM ALS is building public awareness that their involvement is necessary to win the battle against neurodegenerative disease. And we don’t stop there. Once someone is aware of the problem, I AM ALS equips them with the tools to address it.

In 2017, Brian was diagnosed with ALS the same day he and his wife brought their second daughter home from the hospital. In 2018, Brian launched a patient-led, patient-centric non-profit called I AM ALS. Their journey was profiled in WIRED magazine. Brian and Sandra utilized their experience in political campaigns and the White House and surveyed the state of the disease globally. In building I AM ALS they;

• Met with hundreds of patients, caregivers, doctors, nurses, biotechs and pharma companies

• Analyzed ALS messaging to develop a public relations campaign

• Built a landscape of the foundations involved

• Built a novel Patient Advisory Committee of patients, caregivers, and advocates

• Built a Scientific Advisory Committee of leading clinicians and researchers

They decided to act, because they found: 

• ALS patients and caregivers remain largely isolated, invisible, and without clear access to needed resources,

• ALS research is underfunded and not well coordinated, and 

• The fractured groups and disorganized way of making progress against ALS has not worked

The result was I AM ALS, an organization that mobilizes patients, delivers resources for patients, brings together the ALS community and transforms public understanding—with the goal of dramatically increasing research funding and the speeding of cures. 

ALS is a relentless disease. Every 5 minutes someone in the world is diagnosed with ALS. It afflicts every age, gender, race and nationality. When one is diagnosed, they are told that there is nothing that can be done to avoid a swift and painful death where they will become a prisoner in their own bodies, and are often left on their own to uncover information about what ALS is or how they can fight.

I AM ALS is led by a patient who lives this reality every day, and that infuses our work with the urgency it requires and deserves. We believe that faster cures and better health advocacy require building individuals’ real power and ownership in the fight to create a permanent community of action. A community where everyone has a role in the fight for a cure. Where patients feel empowered to lead the fight against their own disease. Where the general public is invested in and a part of this fight because they know their involvement can finally tip the scales. And where researchers have the resources they need to find a cure. Each of us has the power to change the world; together, we will.

By using his determination, hope and extraordinary skills, Brian has changed the face of ALS. I AM ALS has become one of the two largest online ALS communities in the world with 70,000 individuals organizing together. Backed by this community of 70,000 and with Brian’s powerful testimony to Congress in April 2019, I AM ALS drove the effort that led to a doubling of Department of Defense funding for ALS research (from $10 to $20 million)--the largest single year increase ever. On June 17, 2020, the National Institutes of Health announced $25 million in new funding to “spur innovative research” to combat ALS. This was the direct result of a meeting Brian facilitated with Congressional leadership and NIH. Brian's advocacy work also launched the first Congressional ALS Caucus, which now includes over 140 members. 

Brian's fundraising efforts have resulted in raising nearly $2 million in seed funding which I AM ALS is using to remake every facet of the ALS fight with a speed and collaborative spirit never seen before. By way of example, I AM ALS  secured a grant from and partnership with the Chan Zuckerberg Initiative to support I AM ALS’s development of novel organizing tools that will be made available for free to every disease advocacy group in the world. This was one of the first grants by Chan Zuckerberg to a disease advocacy group, made based on the belief that I AM ALS’s model could revolutionize the fight against neurological and rare disease writ large. 

Nearly 1 in 3 patients diagnosed the same day as Brian are dead. While ALS has affected his body, his spirit remains unbroken. It is stronger because in the last 5 years we have made more progress than the previous 145 years combined, changing the quest to cure ALS from a question of if to when. 

Faced with a devastating diagnosis, Brian chose not just to fight for his own life but to start a movement to speed cures for all living with ALS. I AM ALS democratized the ability for people living with ALS and their caregivers to have a powerful voice and take part in demanding a system that works better for them.  

Brian has created this community of hope and support for himself and so many others – those living with terminal illnesses and those who want to appreciate the value of the present moment. His willingness to share his story with honesty and grace has inspired others to do the same, and to find the courage to raise awareness about ALS. President Obama shared Brian's story, stating "Brian and Sandra wake up every day believing that we can win this fight—and that makes me hopeful, too."

Brian is one of the world’s most influential advocates in the fight against neurodegenerative disease. Under Brian’s leadership, I AM ALS became the first ALS patient advocacy group to bring together FDA leadership and a biotechnology company in July 2019. In December 2019, I AM ALS filled twelve iconic Times Square billboards with messages that a cure could lead to cures for Alzheimer’s, Parkinson’s, and others. 

In April 2020, Brian testified to Congress in support of additional $40 million in research funding. Through his leadership, federal spending on ALS research has nearly doubled in just 18 months. I AM ALS developed an interactive map demonstrating that every congressional district is impacted by ALS and worked with Congress to introduce two bills to speed access to promising therapies. Brian’s Wired magazine profile brought mainstream attention to the fight, attracting new supporters by social media shares from Vice President Joe Biden and others.

Despite the extraordinary amount of time and effort Brian dedicates to I AM ALS, he maintains an active litigation and pro bono practice as an attorney. He helped secure the exoneration of a pro bono client, who is believed to have waited longer for exoneration than any other American.