Who We Are
Founded with a dedicated purpose, the Upstate New York Chapter stands as a crucial pillar in addressing the specific needs of individuals grappling with the challenges of Amyotrophic Lateral Sclerosis (ALS) and the devoted caregivers who support them.
In alignment with the broader mission of the ALS Association, our chapter contributes significantly to the nationwide endeavor dedicated to combating ALS. The ALS Association, distinguished as the sole national not-for-profit health organization exclusively committed to the fight against ALS, adopts a holistic approach that encompasses advocacy, care services, and research. This multifaceted commitment positions the Association as a beacon of support, providing comprehensive help and fostering hope for those navigating the complexities of ALS.
The diverse services and programs meticulously designed to enhance the quality of life for individuals affected by ALS are at the core of our mission. From impactful advocacy initiatives to cutting-edge research endeavors, our chapter actively engages in a spectrum of activities aimed at making a tangible difference.
These critical initiatives, which include providing care services, community support, and advancement in research, would not be possible without the profound generosity of our donors. Whether contributing a small, heartfelt donation or a more substantial gift, each act of giving becomes a powerful force in the ongoing battle against ALS. The ALS community is infused with hope for a brighter and more resilient future through the collective commitment and support of individuals like you.
What We Do
What We Do:
- The ALS Association conducts a global ALS research program, investing over $120 million in research collaborations and funding nearly 100 active projects selected through peer reviews by top ALS scientists.
- Operating globally, it funds all phases of ALS research, translates findings into therapies, and collaborates with government, academia, industry, and nonprofits.
- The Association adapts to changes in the ALS landscape, linking research to neurodegenerative diseases and implementing a solid strategy focusing on six key areas.
Research Highlights:
- Significant findings include using induced pluripotent stem cells for drug development, advancing antisense therapy in genetic ALS, and identifying the C9orf72 gene.
- The ALS Association offers grants and awards, including the Milton Safenowitz Post-Doctoral Fellowship and Sheila Essey Award, to support individual scientists and private industry in developing ALS treatments.
Spirit of Collaboration and Leadership:
- The ALS Association holds annual workshops, bringing together scientists, the pharmaceutical industry, and biotech companies for collaborative research.
- Association staff hold leadership positions in various national and international organizations dedicated to ALS research.
Public Policy:
- Advocating for increased support, the Association's network influences public policy initiatives, resulting in achievements like eliminating the 24-month Medicare waiting period and establishing the National ALS Registry.
- Efforts extend to veterans' benefits, designating ALS as a service-connected disease.
Care Services and Chapter Relations:
- The ALS Association provides day-to-day support for patients and families, offering information, resources, and referrals through a network of chapters.
- The Walk to Defeat ALS® raises funds nationwide, supporting ALS patients and families through the Association's Certified Centers of Excellence.
Public Education & Awareness:
- Through public outreach, media relations, and online platforms, the Association raises awareness about ALS, reaching a wide audience monthly.
- Collaborations with organizations like Major and Minor League Baseball enhance awareness and support for ALS issues.
