Our Impact in 2024

2024 began with a historic victory as New York Governor Kathy Hochul secured $25 million in the New York State budget for ALS research and other neurodegenerative diseases, treatment, and vital services. Care Services continued to evolve as a cornerstone of our work, with highlights including the 4th Annual Virtual Education and Resource Summit, Hudson Valley Patient and Family Day, and the launch of “Conversations With...”, a video series exploring the deeply personal experiences of ALS. We also introduced the Joseph Cotrone Holiday Dinner Program to bring joy to families during the holiday season.

Our Walk ALS season kicked off in March at Madison Square Garden and continued with six regional Walks, raising $1.5 million. Advocacy efforts produced the passage of the Senator Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act. New research partnerships were formed with organizations like the Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) and The Accelerating Medicines Partnership® in Amyotrophic Lateral Sclerosis (AMP® ALS).

ALS awareness shone brightly through events like Lou Gehrig Day at three New York ballparks and three events celebrating the 10th anniversary of the Ice Bucket Challenge, including ringing the opening bell at NASDAQ. Our endurance and fundraising events, including the TCS New York City Marathon, United Airlines NYC Half Marathon, TD Five Boro Bike Tour, and ALS Iron Horse Golf Classic, raised over $550,000.

The year concluded with the Lou Gehrig Legacy Gala, where New York Governor Kathy Hochul presented our Jacob K. Javits Lifetime Achievement Award to Dan Doctoroff, founder of Target ALS and former NYC Deputy Mayor. The evening also celebrated ALSA Board Member David Lubars, and three sports legends: Adam Graves, Thomas Morstead, and John Sterling. Their contributions, alongside your support, have brought us closer to a world without ALS.

Below are a few highlights. You can read the full report here.

1,238

People with ALS Served

Care Services

For more than 30 years, ALS United Greater New York has been the region’s leading provider of ALS services. Backed by a team with over 192 years of combined experience, we deliver expert, compassionate care through our dedicated staff and clinic partners, supporting patients and families across New York and New Jersey.

Multidisciplinary Clinics

ALS United Greater New York is proud to collaborate with nine multidisciplinary ALS clinic partners to provide comprehensive care. These partnerships, combined with our integrated wrap-around care, ensure seamless support to the more than 1,200 families we served this year. Notably, this past year marked the unveiling of a new, state-of-the-art clinic space at Hackensack University Medical Center. This facility features private examination rooms for all disciplines on a single floor, enhancing the patient experience. Additionally, our ALS United affiliated clinics remain at the forefront of clinical trials and research, helping to reduce diagnostic wait times and enable more timely, proactive care.

9

Multidisciplinary Clinics

1,123

Pieces of Equipment Delivered

Equipment Loans

Our Equipment Loan, Home Accessibility, and Assistive Technology programs continue to be productive! We are increasing our scope to meet the growing needs of our community. In 2024 we added 165 new pieces of equipment to our program and delivered wheelchairs, hospital beds, and power patient lifts to families in all corners of our region. As always, this service is free of charge. In parallel, our assistive technology team conducts virtual home assessments regularly, enhancing safety and accessibility in the home environments.

Virtual Education Summit

Approximately 300 people attended our 4th Annual Virtual Education and
Resource Summit as part of ALS Awareness Month. Among the many educational sessions offered to our community were topics such as drug therapies, genetics, palliative care, and sessions for caregivers. Maintaining our tradition, we also emphasized the unique experiences of veterans and the services available to support them. We were fortunate to welcome a closing keynote address from Dr. Ajay Sampat, a neurologist who is living with ALS. Dr. Sampat’s personal and unique perspective on the ALS experience inspired and enhanced our understanding of our entire audience. All videos from the Summit are available on the Education & Resources page. 

300

Education Summit Participants

$17M+

Over two decades.

We proudly supported the following Research Initiatives in 2024:

  • The Milton Safenowitz Postdoctoral Fellowship Program
  • PREVENT ALS
  • ALS Network Research Program
  • Target ALS Springboard Fellowship Program
  • Expanded Access
  • The Accelerating Medicines Partnership® in ALS
  • The Northeast ALS Consortium (NEALS)

Research Advancements

As a signature program investment, ALS United Greater New York proudly supports the development of bright, young scientists through The Milton Safenowitz Postdoctoral Fellowship Program. The Safenowitz family, through our organization, founded the award in memory of Milton Safenowitz, who died of ALS in 1998. Fellows work with a senior mentor and receive extensive exposure to the ALS research community. Upon completion of their fellowship, more than 75% of the awardees remain in the field of ALS research, many going on to establish their laboratories to continue studying ALS and mentor more ALS researchers along the way.

ALS United Greater New York, along with our 14 other ALS United member organizations, have taken another significant step in the battle against ALS by collectively supporting The Accelerating Medicines Partnership® in ALS (AMP® ALS) initiative. AMP® ALS brings together the resources and expertise of the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH), the Food and Drug Administration, Critical Path Institute, and other stakeholders from academia, life science companies, foundations, and patient-focused groups. This groundbreaking project aims to expedite the development of effective treatments for ALS, providing hope and progress for those affected by this relentless disease.

ALS United members exemplify a steadfast commitment to ALS research through substantial investments across a wide spectrum of initiatives. These efforts are bolstered by collaborations with esteemed organizations like the Northeast ALS Consortium (NEALS), and the American Brain Foundation.

Advocacy 

The 2024/2025 New York state budget held a significant victory for those living with ALS. An incredible $25 million was allocated through the New York State budget for ALS and rare disease research. The Governor, whose mother passed away from ALS in 2014, demonstrated strong leadership in making this funding a reality. The $25 million will support rare disease research and treatment, with a significant focus on ALS. This achievement highlights the power of partnership and advocacy in advancing ALS research and care.

Our advocacy efforts in 2024 included visits to Washington, D.C., and Albany, and testifying before the New Jersey Senate Budget Committee. You can read about all of our advocacy efforts here. 

$25M

From New York State Budget for ALS and rare disease research

4,000

PARTICIPANTS

Walk ALS

In 2024, we held Walk ALS events from May through October in New York City, Westchester, North Jersey, Jersey Shore, Long Island, and in the Hudson Valley. With more than 4,000 walkers, $1.5 million was raised to support programs, services and research. We are grateful to the many dedicated and visionary team captains, event participants, volunteers, sponsors, and ALS advocates who participated. Join us for one of our six walks in 2025 at alswalks.org!

Thank You to Our Top Ten Fundraising Teams!

Dani’s Defenders
Five O’Clock Lightning
FOR THE LOVE OF JEMMA
Katz Walkers
Our Love For Mona
Pablo’s Pals
Team Mike Leiderman
Team Yorktel
The Watchung Cunninghams
Zdzislaw Gabryszewski

Lou Gehrig Legacy Gala

The ALS United Greater New York community gathered on November 12, 2024, for the annual Lou Gehrig Legacy Gala, a night dedicated to reflecting on the strides made in ALS research and care while honoring those who have become beacons of hope in the fight against ALS. Hosted by the renowned Jeremy Schaap, with special guest Bob Costas, the event recognized outstanding individuals who have made significant contributions to ALS research, care, and advocacy.

The 2024 Jacob K. Javits Lifetime Achievement Award was presented to Daniel L. Doctoroff, founder of Target ALS and former NYC Deputy Mayor, for his commitment to ALS research and advocacy. We were honored to have the Governor of New York, Kathy Hochul, join us to present Dan Doctoroff with the Javits Award. For Governor Hochul, the battle against ALS is personal, having lost her mother to the disease in 2014. Additionally, we proudly recognized David Lubars with the Champion Award for his decades-long commitment to raising awareness through his creative work as Chief Creative Officer, BBDO Worldwide and as a dedicated board member of ALS United Greater New York.

The Lou Gehrig Sports Award was presented to three exceptional figures in the sports world who exemplify the resilience, strength, and leadership that defined Lou Gehrig’s legacy. New York Rangers legend Adam Graves, New York Jets punter Thomas Morstead, and John Sterling, New York Yankees iconic radio play-by-play announcer, were celebrated for their exceptional achievements on the field and profound contributions beyond it.

The Gala’s impact extended beyond heartfelt speeches and awards. With generous contributions from supporters, the event raised nearly $700,000 adding to the more than $26 million raised by the Lou Gehrig Legacy Gala over the years. These funds enable ALS United Greater New York to provide essential care and resources to ALS patients while advancing research to find a cure.

Mark your calendar for next year’s gala – November 11, 2024, at Pier Sixty in New York.

$700,000 Lou Gehrig Legacy Gala

$400,000

Raised by Team ALS

TEAM ALS

Over the course of 2024 Team ALS raised more than $400,000, thanks to the efforts of 95 athletes hailing from various corners of the world, including New Zealand, California, Colorado, and Florida, with a significant representation from our local community in Greater New York. These athletes participated in the TCS New York City Marathon, United Airlines NYC Half, TD Five Boro Bike Tour, and individual endurance events. If you are interested, please contact Tara Connors at 212-720-3054 or tconnors@als-ny.org. 

Community Fundraisers

Working with our local community to host their fundraising events, many participants and volunteers built connections, raised ALS awareness, and generated more than $380,000 in donations to support care services, advocacy, and research. Our top fundraisers included the annual Iron Horse Party, golf outings, sports competitions, and community Walks. If you have a hobby, interest, or passion and want to raise funds and awareness around ALS, contact Tara Connors, Senior Coordinator, Fundraising & Special Events at 212-720-3054 or tconnors@als-ny.org. 

$380,000

Raised by Community Fundraisers

$120,000

Raised at The Iron Horse Golf Classic

The ALS Iron Horse Golf Classic

The ALS Iron Horse Golf Classic celebrated its seventh successful outing at Sands Point Golf Club on Monday, August 12, 2024. More than 100 golfers raised over $120,000 for our services and programs while enjoying a great day on the course. Save the date for the Eighth Annual ALS Iron Horse Golf Classic on August 11, 2025.

Lou Gehrig Day

ALS United Greater New York celebrated the legacy of Lou Gehrig with the New York Mets, the New York Yankees, and the Brooklyn Cyclones in 2024. We were joined by many friends and family at Citi Field on Sunday, June 2nd for the 4th annual Lou Gehrig Day, which was commemorated across all Major League Baseball parks on that date. On Thursday, July 4th, we were honored to be on the field with Her ALS Story, I AM ALS, ALS Ride for Life, and Quinn for the Win at the New York Yankees game to help celebrate ALS Day and honor the legacy of Lou Gehrig on the 85th anniversary of his “Luckiest Man Alive” speech. On Saturday, July 20th, the Brooklyn Cyclones held ALS Awareness Night at Maimonides Park in Coney Island as part of the Cyclones’ game against the Jersey Shore BlueClaws. Ron Reisman, from the Long Island Walk Team FOR THE LOVE OF JEMMA, threw out the first pitch. For information on 2025 Lou Gehrig Day, contact Meg Emery at memery@als-ny.org.

June 2nd

Lou Gehrig Day