I AM ALS

ALS is currently a fatal disease. With no treatments or cures, people diagnosed with ALS typically die within two to five years. I AM ALS was founded to change this -- to rewrite the ALS story by revolutionizing how to end disease. As a patient-driven movement, I AM ALS elevates the voice of those most impacted by the disease and empowers them to raise awareness and lead the movement for the development of cures. True to its mission, the Elevate Prize would further accelerate the change the I AM ALS community is already driving. Specifically, the funding would support the work of the I AM ALS community such as awareness building (e.g. partnering with Major League Baseball to establish an annual Lou Gehrig Day), political advocacy (e.g. successfully advocating for $83M increase in federal funding for ALS research and policies to better support those currently living with ALS), and reforming the broken research system (e.g. galvanizing partners from across the system to collectively address the challenges that have led to decades of failed clinical trials.)

Brian Wallach is an attorney and person living with ALS. In the aftermath of his diagnosis in November 2017, he realized the ALS ecosystem was fragmented and patients’ voices were often ignored. Cautious about starting yet another ALS nonprofit, Brian and his wife Sandra Abrevaya saw a unique opportunity to leverage their deep experience and network in policy and political organizing from working on the 2008 Obama campaign and serving in the Obama White House to make a difference. In January 2019, they co-founded I AM ALS as a patient-led, patient-centric movement to end ALS by driving the development of cures. In just two years, over 40,000 people impacted by ALS have joined the I AM ALS community finding a platform to share their voice, experience and skills to make a difference. Currently, Brian is a board member of I AM ALS and a prominent leader in the ALS community including daily advocacy on Twitter to over 77,000 followers and passionate testimony in Congress. The goal of Brian, Sandra, and I AM ALS is to greatly accelerate the speed and efficacy of research so ALS is no longer a death sentence.

ALS can affect anyone. It is a relentless neurodegenerative disease in which patients become prisoners within their own bodies, unable to eat, breathe, or move until they eventually die. As many as 30,000 Americans may be living with ALS and over 5,000 people are diagnosed in the U.S. each year. Approximately 500,000 are living with ALS globally.

In nearly 150 years, no meaningful treatments have been developed. In the last 20 years, there have been 50 failed clinical trials for ALS. Historically, patients have been excluded from conversations about research design and stakeholders across the ALS ecosystems have failed to effectively collaborate around their shared goal of finding cures.

I AM ALS’s theory of change focuses on using political organizing to empower patients, caregivers and loved ones to drive a movement for cures. We have created a platform to raise the voices of those impacted firsthand by the disease gaining influence at all levels of the system from designing research and developing healthcare policy to improving financial support and the delivery of care. We also directly support patients and families through our Navigation program, a concierge-like service helping people connect with resources and support.

I AM ALS’s patient-driven approach is disrupting the ALS ecosystem. For too long, people living with ALS have been prohibited from attending conferences and excluded from conversations about ALS research design and priorities. They have been overlooked as valuable contributors in the development of policies and programs meant to benefit them. In just two years, the I AM ALS community has emerged as a force to change this dynamic. I AM ALS community members have built partnerships with biopharmaceutical companies, drafted principles for ALS research, been invited to serve on policy and research committees, and launched a clinical trials research dashboard, ALS Signal, and the Patient-Centric Trial Design (PaCTD) rating system, to hold drug sponsors accountable to the patients in the trials.

To build this patient-driven movement, Brian and Sanrda took the innovative approach of translating the principles of community organizing that have built successful political campaigns and social movements into a model of movement building in the rare disease fight. With a commitment to spreading this innovation and activating other similar movements in rare disease, I AM ALS recently codified and publicly shared our strategies and learnings about building a movement against ALS in the Organizing Playbook.

I AM ALS is rewriting the ALS story through three core programs. 

1. Navigation serves as a community-based 'ALS concierge,' empowering patients and loved ones with relevant medical and research information, supporting them emotionally, connecting them with practical resources and helping them build a community of support around them. This free service addresses the harsh realities of the disease increasing patients’ and caregivers’ ability to cope with the impact of ALS on their physical, emotional and mental health.
2. The I AM ALS Community includes over 40,000 ALS advocates organized into eight teams including Legislative Affairs, Community Outreach, Veterans Affairs, Clinical Trials. These teams work to increase public awareness, draw a wider population to ALS advocacy, and drive the acceleration of cures through bringing urgency to the research system and improving the system through advocacy.  
3. We are currently launching a Research program focused on improving the effectiveness of ALS research by increasing patient involvement in conversations about trial design and research prioritization, convening all stakeholders for collective problem solving to address the barriers facing patient access to therapies and the speedy consideration of new treatments, and creating a dashboard of all ALS research to increase visibility and transparency in research funding.