| As a valued member of our ALS community, we have important news to share with you on behalf of our Board of Directors and staff. As of September 1, 2023, fifteen chapters currently members of the ALS Association will begin the process of legally separating from the organization. This includes Connecticut. 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. We want to assure you that our essential programs and services, including care management, clinic support, equipment loan programs, support groups, educational webinars, events of all kinds, and support of groundbreaking research initiatives will not be disrupted as a result of the separation process. Why is this happening? • In July 2021, the national Board of Trustees of the ALS Association voted to begin a process of merging all 34 independent chapters across the country into a single organization headquartered in Arlington, VA. That vote effectively called for the elimination of independent chapters like ours. · • After thoughtful deliberation and an assessment of the impact on the communities we serve, Connecticut chose to maintain our 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. What next? • Our programs and services are unduplicated and highly valued by the community we serve. Please be assured that all of our programs and services offered will continue to be available to anyone affected by ALS in Connecticut. This includes our robust Equipment Program, support to ALS Clinics, support groups, care assist grants, transportation, family and caregiver programs and support, and access to our team of professional Care Managers. · • Connecticut 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. · • We hope to see you at one of our Walks to Defeat ALS this fall in Hartford, New Haven, and Westport! Click here for event details. · • Be on the lookout for an announcement of our name change and new logo in the coming months. Everything we do is powered by people like you who care about people with ALS, and we deeply appreciate your continued commitment. We look forward to the new opportunities this will bring so that we can best serve our ALS Community. I welcome your feedback and invite you to connect with me at jrose@alsact.org. In partnership and gratitude, Jacky Rose Executive Director |
