Our Impact in 2022
Through motivated, inspired, and challenging work, 2022 empowered those living with ALS in the Greater Chicago Area.
Our ALS Staff, Board of Directors, Ambassadors, and Volunteers have been, and always will be, committed to connecting our local ALS community so that no one faces an ALS journey alone. We are privileged and proud to serve our community.
People with ALS Served
Care Services Successes
As we look back on 2022, ALS United Greater Chicago continued the hybrid programs and services that fit our patient community during the pandemic while also exploring opportunities to expand. Not only did our programmatic options increase, offering a rich and robust selection of educational workshops and support groups, but our team continued working around the clock through virtual platforms to keep the lines of communication open. We provided continuity of care to 452 individuals living with ALS through ongoing virtual support, equipment training, multidisciplinary treatment options, and respite care grants.
Living Well with ALS
This educational program covers a variety of ALS-related topics ranging from the latest in worldwide research to advice and updates from ALS care experts. The program features presentations by invited guests and staff followed by a Q&A session.
Living Well with ALS Participants
Caregiver Boot Camp
The ALS United Greater Chicago Caregiver Boot Camp program is designed to inform family, friends, and non-professional caregivers about the role of a caregiver, how to use common pieces of medical equipment, and provides an opportunity to ask questions to be prepared to assist a loved one living with ALS.
2023 Caregiver Boot Camp Upcoming Date | November 18th
In 2022, a generous donation of $10 million dollars was made from the Lohengrin Foundation to the labs of Raymond P. Roos, MD (ALS Multidisciplinary Clinic Director, University of Chicago Medicine) and Paschalis Kratsios, PhD. This donation is for their collaborative work on clinical and experimental investigations of ALS. The focus of their studies has been familial ALS (FALS) caused by mutations in the C9ORF72.
Invested in ALS Research to University of Chicago Medical Center
Will be invested over 5 years for ALS research
While the pandemic continued throughout 2021, your advocacy for those living with ALS produced some incredible wins, both on the federal and state level. Accelerating Access to Critical Therapies for ALS Act - Thanks to the incredible advocacy of the ALS community, the Accelerating Access to Critical Therapies (ACT) for ALS Act passed Congress and was signed into law by President Biden on December 23, 2021. This act authorizes $100M over five years for ALS research and creates the first federal entity explicitly charged with developing treatments for neurodegenerative diseases. Specifically, the bill would create a new:
- Framework for delivering experimental therapies to people with ALS
- Research grant program at the FDA for rare neurodegenerative diseases
- Collaborative for Rare Neurodegenerative Diseases at the Department of Health and Human
Services (HHS) to coordinate federal efforts on developing and approving treatments and cures.
Where Are Your Donations Going?
People attended 98 support groups
Active research projects worldwide
Patients received care and clinical management of ALS through one of our 6 multidisciplinary centers
Virtual home visits
Newly diagnosed individuals living with ALS provided with support.
Counties served by the ALS United Greater Chicago