Upstate New York Chapter

  • As a result of the increased funding realized from the Ice Bucket Challenge, the Upstate New York Chapter was able to invest considerable resources the Care Services staffing and programs. Our Care Services staffing doubled so that there is now a Care Services Coordinator located in each of the four distinct geographic areas of our 48-county service area. Because they live and work in the communities alongside our pALS, the Care Services Coordinators not only have a deeper knowledge of local resources and supports, they are able to offer more frequent, face-to-face, personalized interaction with our clients. Post Ice Bucket Challenge, the UNY Chapter also expanded the number and size of Respite Care Grants and created a Financial Assistance Grant Program which helps defray the costs of unreimbursed medical expenses, travel to clinic appointments, home modifications, and assistive technology to improve the quality of life for patients and alleviate caregiver stress. Depending on available resources, Upstate New York families can access up to $8,000 in any given year.

    The financial support resulting from the Ice Bucket Challenge obviously facilitated exponential growth in local Chapter resources available to patients. However, the increased awareness of ALS, patient needs, and the existence of available local Chapter programs and services has also been equally significant. We have strengthened our relationships with both our national and state elected officials. Our national Representatives and Senators overwhelmingly support our public policy initiatives and the New York State Department of Health has designated funding to help support our Care Services programming every year since 2015.

    Many thanks to everyone who donated to the Ice Bucket Challenge, and who continue to support our mission. We could not do this without you!

Challenge Me to Empower People Living with ALS

Funds from the ALS Ice Bucket Challenge have given us the opportunity to expand our programs and services to provide additional care and support for people with ALS and their families.

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