ALS United Chicago

A letter from our leadership team:

As of September 1, 2023, fifteen chapters currently members of the ALS Association will legally separate from the organization. This includes Greater Chicago. These chapters represent nearly half of the patient community and more than half of the Certified Treatment Centers of Excellence and multidisciplinary specialty clinics for ALS in the U.S.

Why is this change occurring?

Over the past two years, the national office of the ALS Association has worked to merge all 34 legally and financially separate corporate chapter entities across the country into a single organization. The ALS Association’s efforts to consolidate its historically independent members resulted in a dispute that was resolved earlier this month.

After thoughtful deliberation and an assessment of the impact on the communities we serve, Greater Chicago chose to maintain our corporate autonomy to ensure the highest standard and continuity of care for our ALS community while facilitating the search for effective prevention strategies, treatments, and cures. Greater Chicago is collaborating closely with the 14 other independent chapters separating from the ALS Association and will continue to maintain a robust network of information and resource sharing across the ALS community. Our programs and services are unduplicated and highly valued by the community we serve.

An organization with a grassroots origin story, Greater Chicago is a trusted resource. We have a decades-long track record of growth and evolution, and a deep dedication to evidence-based, data-driven, patient-centric approaches to program development and strategic initiatives. We also have a reputation for being a responsive, solutions-oriented thought leader and collaborative partner.

As part of this important change, we are excited to reveal our ALS United Greater Chicago website. While our name and look are changing, our dedication to the local ALS community is stronger than ever.

As we chart our next steps of growth and development in pursuit of our ultimate vision of ending ALS, we will provide timely and transparent updates, and we will seek your feedback along the way. We also want to assure you that our essential programs and services, including care management, clinic support, educational webinars, equipment loan programs, support groups, events of all kinds, and the support of groundbreaking research initiatives will not be disrupted as a result of the separation process.

Embracing change provides Greater Chicago with tremendous opportunities.

Everything we do is powered by people like you who care about people with ALS, and we deeply appreciate your continued commitment. We welcome your feedback and invite you to reach out to

Warm Regards,

Julie M. Sharpe | President & CEO

Joumana Baroody, RN, BSN | Vice President, Care Services

Kendra Albers | Vice President, Development

At ALS United Chicago, our core mission is bringing the community together to fight against Amyotrophic Lateral Sclerosis (ALS), providing comprehensive care and support for patients and their families. From newly diagnosed support, ALS clinics and centers, to adaptive equipment and more, we offer a range of services aimed at making the journey with ALS easier and more supported. We also spearhead vital research and clinical trials to advance our understanding and treatment of ALS, with the goal of ultimately finding a cure. Engaging the wider community through advocacy, public policy priorities, and fundraising events, we strive to raise awareness and garner support for the fight against this debilitating disease. Through our efforts, we focus on providing practical assistance to those affected by ALS.