Our Impact in 2021
(Add a summary paragraph. Update this page with your own chapter impact stats. Update each year when you put your annual report together.)
People with ALS Served
Care Services Successes
As we look back on 2021, The ALS Association Greater New York Chapter 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 1,133 people with ALS through ongoing virtual support, equipment training, multidisciplinary treatment options, and respite care grants.
Virtual Education Summit
In April of 2021, over 300 members of the ALS community gathered online for the first annual ALS Association Greater New York Chapter Education and Resource Summit. While we were unable to gather everyone together in person, it was important to the Chapter that we continue to provide educational resources to the ALS community. This ensured that we remained up-to-date on all that is taking place in the ALS landscape, and the tools that people living with ALS and their families have at their disposal. Nineteen sessions took place over three days and featured presentations from the leading neurologists and experts working in the field of ALS. Topics included: Advances in ALS Research, Clinical Trials, and Enrollment, to Intimacy and ALS, and How to Be a Strong Self Advocate, among others. All videos from the Summit are available on the Chapter's YouTube channel.
Education Summit Participants
Pieces of Equipment Delivered
We partnered with vendors to deliver close to 400 pieces of Durable Medical Equipment and Assistive Communication Equipment. Multidisciplinary Clinics - The Greater New York Chapter is proud to support ten multidisciplinary ALS Clinic programs. Together with our clinic partners and dedicated Care Services staff, we work to meet the needs of the entire ALS community.
Our collaborative and global approach to funding research continues to lead to significant discoveries by top ALS scientists around the world. Even in the face of the continued pandemic, our efforts did not slow. Since the inception of the Greater New York Chapter, with our 2021contribution, we have invested more than $15 million in ALS research. In funding both local and global research programs, The Greater New York Chapter has supported initiatives such as:
- The ALS Research Program at the New York Genome Center
- Milton Safenowitz Postdoctoral Fellowship Program
- Clinical Studies and programs in the area of drug development
Invested in ALS Research
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?
.82 Cents of Every Dollar Raised Goes to Our Programs
People attended 136 support groups
Active research projects worldwide
Patients received care and clinical management of ALS through one of our 10 multidisciplinary centers
Virtual home visits
in monetary grants to cover 2,400 hours of in-home health care and additional expenses such as prescription co-pays, and more
Rides provided free of cost for patients to attend appointments at Chapter multidisciplinary clinics