Together, we are stronger. Together, we end ALS.<\/h6>\t\t\n\tCARE SERVICES<\/strong><\/h6>\nOn January 30th, ALS United Greater New York hosted a special\u202fTalk. Learn. Connect.<\/strong><\/em>\u202fevent at Patrizia’s Restaurant in Hicksville, NY, which was generously supported by the Joseph Cotrone Foundation. The evening featured Dr. Matthew Harms of Columbia University, who shared exciting ALS research updates, and attorney Richard Weinblatt, who discussed important Medicaid changes. The event brought together a full room of ALS community members for a night of learning, connection, and great food. Keep an eye out for more in-person events throughout the year!\u00a0<\/p>\n\t\t\t\t\t\t\t\t\t![\"Research](\"https:\/\/als-ny.blackbaudwp.com\/wp-content\/uploads\/2025\/04\/Research-update-Jan-2025-scaled.jpg\" "\\"Research")
\n\t\t\t\t\t\t\t\t\t![\"NYC](\"https:\/\/als-ny.blackbaudwp.com\/wp-content\/uploads\/2025\/04\/NYC-walk.jpg\" "\\"NYC")
\n\tWALK ALS<\/strong><\/h6>\nOur Walk ALS season<\/a> kicked off on Saturday, May 3rd, in New York City at South Street Seaport, Pier 16. Walks in Westchester, North Jersey, Jersey Shore, Long Island, and Hudson Valley will follow in June, September, and October. Your participation, commitment, and fundraising efforts are key to helping us ensure that the local ALS community continues to receive the highest quality of care.\u00a0\u00a0<\/p>\nJoin us to Walk in Honor. Walk in Memory.<\/h6>\n Walk United to End ALS!<\/h6>\n
2025 WALK SCHEDULE:<\/strong><\/p>\n\n- Walk ALS Westchester: Saturday, May 31st – Manhattanville University, Purchase, NY<\/li>\n
- Walk ALS North Jersey: Sunday, June 8th – Saddle River County Park, Saddle Brook, NJ<\/li>\n
- Walk ALS Jersey Shore: Saturday, September 13th – Along the Promenade, Long Branch, NJ<\/li>\n
- Walk ALS Long Island: Saturday, September 20th – Eisenhower Park, East Meadow, NY<\/li>\n
- Walk ALS Hudson Valley: Sunday, October 19th – Walkway Over the Hudson, Highland, NY<\/li>\n<\/ul>\n\t\t\t\n\t\t\t\t\t\t\tRegister and read more about our WALK Program\n\t\t\t\t\t<\/a>\n\t
Progress in ALS Treatment: Qalsody\u00ae Brings Measurable Improvements<\/strong><\/h6>\nQalsody\u00ae (tofersen) is approved for the treatment of ALS in adults with a confirmed mutation in the superoxide dismutase 1 (SOD1) gene. Recently published data, though based on a small sample, show promising results-some individuals treated with Qalsody are experiencing not only a halting of disease progression but also actual functional improvement, with researchers noting “meaningful preservation of function and suggestions of sustained improvement.” Administered intrathecally via spinal canal injection, Qalsody offers new hope for eligible patients. SOD1 carriers interested in learning more are encouraged to speak with their ALS neurologist.<\/p>\n\t\t\t\t\t\t\t\t\t![\"Website](\"https:\/\/als-ny.blackbaudwp.com\/wp-content\/uploads\/2025\/04\/Website-photos-3.png\" "\\"Website")
\n\t\t\t\t\t\t\t\t\t![\"Capitol](\"https:\/\/als-ny.blackbaudwp.com\/wp-content\/uploads\/2025\/04\/capitol-dc-trip-1.jpg\" "\\"Capitol")
\n\t
ADVOCACY<\/h6>\n
From Capitol Hill to statehouses in Albany and Trenton, ALS United Greater New York has been leading the charge to protect and advance the rights of people living with ALS. This year’s highlights include securing the introduction of ALS registry legislation in both New York and New Jersey, advocating for the restoration of state budget funding, and uniting with 30 national organizations to call for increased federal investment in ALS research and care. Our team is working tirelessly to turn awareness into action. Learn about all the ways ALS United has been advocating for you by clicking read more.<\/p>\n\t\t\t\n\t\t\t\t\t\t\tRead More\n\t\t\t\t\t<\/a>\n\tALS United Greater New York will host a two-day virtual Education and Resource Summit on\u202fThursday, May 15th, and Friday, May 16th.\u202fJoin us to hear from physicians, nurses, clinicians, and ALS United staff, as they present on topics that will assist those living with ALS to navigate their journey. Sessions include\u00a0Psychological and Emotional Aspects of Living with ALS, Clinical Trials, Respiratory Considerations, Palliative Care, and much more! This virtual summit is free and open to the entire ALS community. Please email\u202fevents@als-ny.org <\/a>for more information.<\/p>\n\t\t\t\n\t\t\t\t\t\t\tClick Here To Register\n\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t![\"Save](\"https:\/\/als-ny.blackbaudwp.com\/wp-content\/uploads\/2025\/04\/save-the-date-summit.png\" "\\"Save")
\n\t\t\t\t\t\t\t\t\t![\"Half](\"https:\/\/als-ny.blackbaudwp.com\/wp-content\/uploads\/2025\/05\/Half-Woman-waving-scaled.jpg\" "\\"Half")
\n\tTEAM ALS<\/h6>\n
On Sunday, March 16th, 15 runners completed the 2025 United Airlines NYC Half, a 13.1-mile journey from Brooklyn to Central Park. On Sunday, April 27th, we had six\u00a0runners take to the streets of Brooklyn with the NYCRuns Brooklyn Experience Half Marathon. On Sunday, May 4th, we had nine cyclists participate\u00a0in the 2025 TD Five Boro Bike Tour, an event that takes cyclists through all five boroughs on a challenging 40-mile-long route.\u202fThese runners and bikers have collectively raised over $200,000.\u00a0<\/p>\n\t
MUSICIANS UNITED FOR ALS: A NIGHT FOR WAYNE WARNECKE – FUNDRAISING EVENT<\/h6>\n
Overflowing with talent, heart, and community spirit, Musicians United for ALS: A Night for Wayne Warnecke<\/em> brought together 300 guests for an unforgettable evening benefiting ALS United Greater New York. Held in honor of beloved music producer and sound engineer Wayne Warnecke, the event featured incredible performances by The Bacon Brothers, Patty Smyth, and Rob Thomas-artists who lent their voices and star power to support the ALS community. The night showcased the power of music to inspire, unite, and drive meaningful change. Learn more about this amazing event by clicking read more.<\/p>\n\t\t\t\n\t\t\t\t\t\t\tRead More\n\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t![\"All](\"https:\/\/als-ny.blackbaudwp.com\/wp-content\/uploads\/2025\/04\/All-Performers-scaled.jpg\" "\\"All")
\n\t\t\t\t\t\t\t\t\t![\"Poulsons\"](\"https:\/\/als-ny.blackbaudwp.com\/wp-content\/uploads\/2025\/05\/poulsons.jpg\" "\\"Poulsons\\"")
\n\tEmpowered Journeys: New Program Offers ALS Patients Life-Affirming Travel Opportunities\u202f<\/h6>\n
Thanks to a generous grant from The Sunshine Foundation, ALS United Greater New York launched a new transportation support program that is already making a life-changing impact. One unforgettable example is the Poulsen family’s recent journey to Copenhagen-a meaningful trip made possible by the program. Click below to read their inspiring story.<\/p>\n\t\t\t\n\t\t\t\t\t\t\tRead More\n\t\t\t\t\t<\/a>\n\tStrength to Bloom: Honoring My Father, Empowering Others<\/h6>\n
When Lauren Garcia-Marcigliano was crowned Mrs. New Jersey International 2025, it wasn’t just a personal achievement-it was a powerful tribute to her father and a rallying cry for families facing ALS. Lauren shares how her journey from caregiver to advocate sparked a movement of compassion, resilience, and empowerment. Through her platform, Strength to Bloom, and her entrepreneurial venture, Bloom Social Club, she’s building communities where ALS families and ambitious women can find support, purpose, and the courage to thrive-even in life’s most difficult seasons.<\/p>\n\t\t\t\n\t\t\t\t\t\t\tRead More Here\n\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t![\"Mrs](\"https:\/\/als-ny.blackbaudwp.com\/wp-content\/uploads\/2025\/04\/MRSNJ-with-dad-2-scaled.jpg\" "\\"MRS")
\n\t\t\t\t\t\t\t\t\t![\"ALS](\"https:\/\/als-ny.blackbaudwp.com\/wp-content\/uploads\/2025\/05\/ALS-Awareness-Days-2.png\" "\\"ALS")
\n\tUpcoming Events<\/b>\u00a0<\/h6>\n
Please save the date for these upcoming events:\u00a0<\/p>\n
On January 30th, ALS United Greater New York hosted a special\u202fTalk. Learn. Connect.<\/strong><\/em>\u202fevent at Patrizia’s Restaurant in Hicksville, NY, which was generously supported by the Joseph Cotrone Foundation. The evening featured Dr. Matthew Harms of Columbia University, who shared exciting ALS research updates, and attorney Richard Weinblatt, who discussed important Medicaid changes. The event brought together a full room of ALS community members for a night of learning, connection, and great food. Keep an eye out for more in-person events throughout the year!\u00a0<\/p>\n\t\t\t\t\t\t\t\t\t Our Walk ALS season<\/a> kicked off on Saturday, May 3rd, in New York City at South Street Seaport, Pier 16. Walks in Westchester, North Jersey, Jersey Shore, Long Island, and Hudson Valley will follow in June, September, and October. Your participation, commitment, and fundraising efforts are key to helping us ensure that the local ALS community continues to receive the highest quality of care.\u00a0\u00a0<\/p>\n 2025 WALK SCHEDULE:<\/strong><\/p>\n Qalsody\u00ae (tofersen) is approved for the treatment of ALS in adults with a confirmed mutation in the superoxide dismutase 1 (SOD1) gene. Recently published data, though based on a small sample, show promising results-some individuals treated with Qalsody are experiencing not only a halting of disease progression but also actual functional improvement, with researchers noting “meaningful preservation of function and suggestions of sustained improvement.” Administered intrathecally via spinal canal injection, Qalsody offers new hope for eligible patients. SOD1 carriers interested in learning more are encouraged to speak with their ALS neurologist.<\/p>\n\t\t\t\t\t\t\t\t\t From Capitol Hill to statehouses in Albany and Trenton, ALS United Greater New York has been leading the charge to protect and advance the rights of people living with ALS. This year’s highlights include securing the introduction of ALS registry legislation in both New York and New Jersey, advocating for the restoration of state budget funding, and uniting with 30 national organizations to call for increased federal investment in ALS research and care. Our team is working tirelessly to turn awareness into action. Learn about all the ways ALS United has been advocating for you by clicking read more.<\/p>\n\t\t\t\n\t\t\t\t\t\t\tRead More\n\t\t\t\t\t<\/a>\n\t ALS United Greater New York will host a two-day virtual Education and Resource Summit on\u202fThursday, May 15th, and Friday, May 16th.\u202fJoin us to hear from physicians, nurses, clinicians, and ALS United staff, as they present on topics that will assist those living with ALS to navigate their journey. Sessions include\u00a0Psychological and Emotional Aspects of Living with ALS, Clinical Trials, Respiratory Considerations, Palliative Care, and much more! This virtual summit is free and open to the entire ALS community. Please email\u202fevents@als-ny.org <\/a>for more information.<\/p>\n\t\t\t\n\t\t\t\t\t\t\tClick Here To Register\n\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t On Sunday, March 16th, 15 runners completed the 2025 United Airlines NYC Half, a 13.1-mile journey from Brooklyn to Central Park. On Sunday, April 27th, we had six\u00a0runners take to the streets of Brooklyn with the NYCRuns Brooklyn Experience Half Marathon. On Sunday, May 4th, we had nine cyclists participate\u00a0in the 2025 TD Five Boro Bike Tour, an event that takes cyclists through all five boroughs on a challenging 40-mile-long route.\u202fThese runners and bikers have collectively raised over $200,000.\u00a0<\/p>\n\t Overflowing with talent, heart, and community spirit, Musicians United for ALS: A Night for Wayne Warnecke<\/em> brought together 300 guests for an unforgettable evening benefiting ALS United Greater New York. Held in honor of beloved music producer and sound engineer Wayne Warnecke, the event featured incredible performances by The Bacon Brothers, Patty Smyth, and Rob Thomas-artists who lent their voices and star power to support the ALS community. The night showcased the power of music to inspire, unite, and drive meaningful change. Learn more about this amazing event by clicking read more.<\/p>\n\t\t\t\n\t\t\t\t\t\t\tRead More\n\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t Thanks to a generous grant from The Sunshine Foundation, ALS United Greater New York launched a new transportation support program that is already making a life-changing impact. One unforgettable example is the Poulsen family’s recent journey to Copenhagen-a meaningful trip made possible by the program. Click below to read their inspiring story.<\/p>\n\t\t\t\n\t\t\t\t\t\t\tRead More\n\t\t\t\t\t<\/a>\n\t When Lauren Garcia-Marcigliano was crowned Mrs. New Jersey International 2025, it wasn’t just a personal achievement-it was a powerful tribute to her father and a rallying cry for families facing ALS. Lauren shares how her journey from caregiver to advocate sparked a movement of compassion, resilience, and empowerment. Through her platform, Strength to Bloom, and her entrepreneurial venture, Bloom Social Club, she’s building communities where ALS families and ambitious women can find support, purpose, and the courage to thrive-even in life’s most difficult seasons.<\/p>\n\t\t\t\n\t\t\t\t\t\t\tRead More Here\n\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t Please save the date for these upcoming events:\u00a0<\/p>\n\n\t\t\t\t\t\t\t\t\t\n\tWALK ALS<\/strong><\/h6>\n
Join us to Walk in Honor. Walk in Memory.<\/h6>\n
Walk United to End ALS!<\/h6>\n
\n
Progress in ALS Treatment: Qalsody\u00ae Brings Measurable Improvements<\/strong><\/h6>\n
\n\t\t\t\t\t\t\t\t\t\n\tADVOCACY<\/h6>\n
\n\t\t\t\t\t\t\t\t\t\n\tTEAM ALS<\/h6>\n
MUSICIANS UNITED FOR ALS: A NIGHT FOR WAYNE WARNECKE – FUNDRAISING EVENT<\/h6>\n
\n\t\t\t\t\t\t\t\t\t\n\tEmpowered Journeys: New Program Offers ALS Patients Life-Affirming Travel Opportunities\u202f<\/h6>\n
Strength to Bloom: Honoring My Father, Empowering Others<\/h6>\n
\n\t\t\t\t\t\t\t\t\t\n\tUpcoming Events<\/b>\u00a0<\/h6>\n