Our Impact in 2023

2023 marked substantial advancements on multiple fronts. Collectively, we continue to make significant strides in combating ALS while this transformative year saw a pivotal moment in our organizational history. We not only rebranded from ALS Association Greater New York Chapter to ALS United Greater New York but also joined forces with 14 affiliated nonprofit
organizations to establish ALS United — an innovative membership organization dedicated to those living with ALS and their families across the country.

Throughout the pages of this impact report, you’ll learn about our dedicated team providing seamless care, our Home Visit Program expanding by over 20% and the Family Grant Program, covering in-home health care and accessibility upgrades, growing by 33%. Additionally, our steadfast commitment to state and federal advocacy resulted in an additional $500,000 in the New Jersey State Budget, reaching $1.5 million. ALS United Greater New York remains committed to advancing groundbreaking ALS research, investing over $16.5 million in the past two decades, including funding for impactful projects based in New York. We are continuing to expand this support as we partner with academia, industry, nonprofits, and government.

Our transformation is more than a name change; it signifies an evolution for our organization. It represents an exciting future, building upon our decades-long legacy as a trusted resource and re-emerging as one of the largest, local ALS patient service organizations in the nation. We are thankful for your support during this journey and look forward to all we will do together in the coming year!

1,268

People with ALS Served

Care Services

In 2023, we continued our hybrid programs and services while also expanding our offerings. We are now providing in-person home visits on a more regular basis and our families benefit from the wider variety of options to connect with our team. Additionally, we continue to expand our grant offerings and our ongoing continuity of care to over 1,000 patients, making 2023 a productive year!

Multidisciplinary Clinics

ALS United Greater New York 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. This past year we welcomed new research clinicians, neurologists, and
team members at several of our clinics. We are extremely proud to be nurturing these partnerships with medical professionals. With our robust teams, research opportunities have expanded as well as clinic capacity.

10

Multidisciplinary Clinics

1,158

Pieces of Equipment Delivered

Equipment Loans

Our Equipment Loan and Assistive Technology programs have enjoyed a great boost this year with the addition of new staff members. Our new ELP Coordinator, Aaron Young, has brought the program to new levels of success by streamlining our tracking and shipping process, enabling us to provide a combined total of 1,158 durable medical equipment pieces and augmentative communication devices in 2023. We continue to provide equipment and devices of all sizes to families in need, and as always this service is free of charge, including delivery. Additionally, Tejal Parikh is our new Accessibility Specialist and, together with Ben Lieman, our Assistive Technology Specialist, has almost doubled the rate of home access assessments being provided.

Virtual Education Summit

Approximately 300 people attended our third 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, and sessions for Caregivers in English and Spanish. We were proud to conclude the Summit with a screening of the film, “Matter of Mind: My ALS,” a sensitive and realistic portrayal of three individuals living with ALS and their different approaches to living with the disease. One of the film subjects is from our region and she joined for a post-screening discussion. All videos from the Summit are available on the Education & Resources page. 

250

Education Summit Participants

$16.5M

Over two decades to support and expedite the discovery of treatments and a cure for ALS. 

Research Advancements

Over the last few decades, significant advancements in ALS research have provided valuable insights into the nature and origins of ALS. In that time ALS United Greater New York, formerly The ALS Association Greater New York Chapter, allocated $16.5 Million to support and expedite the discovery of treatments and a cure for ALS.

ALS United Greater New York will continue building on this historical support as we seek innovative ways to partner with academia, industry, nonprofits, and government. Our strategic partnerships will amplify the impact of our research investments, hasten innovative idea development, promote collaboration, and propel us forward more efficiently.

Our investments thus far have proven instrumental to many research initiatives with a portfolio that includes support of many notable programs such as the New York Genome Center and The Milton Safenowitz Postdoctoral Fellowship Program. Our most recent list of investments in 2023 includes ALS Expanded Access Programs at Columbia University, Eleanor and Lou Gehrig ALS Center; Prevent ALS, Columbia University; ALS Research Network; and Target ALS: Springboard Fellowship Program.

Advocacy 

ALS United Greater New York advocacy works to improve the lives of those living with ALS through legislative measures at both the congressional and state levels.

CONGRESSIONAL ADVOCACY
In April and August of 2023, we worked to increase federal funding of ALS research for treatments and cures by meeting with members of Congress via video conference. People from our community participated in over a dozen meetings with Congressional members and their staff to advocate for the increase of ALS research funding.
STATE ADVOCACY
State legislation can help improve the quality of life of those living with ALS. That is why we supported New York’s bill which would require a review of rules when establishing a step therapy protocol. We also supported New York’s legislation which would prohibit discriminatory coverage and pricing decisions based on genetic testing in life, accident, health, disability, long-term care, or medical indemnity insurance. We are also encouraged by the new legislation that provides for patient prescription pricing transparency that was signed by the Governor in March of 2023.
STATE FUNDING
ALS United Greater New York continues to receive funding by both New York and New Jersey state budgets annually. Thanks to the testimony of a New Jersey resident living with ALS, our New Jersey funding grew to $1.5 million dollars. This funding allowed us to:

  • Expand outreach to ALS Community
  • Grow Equipment Loan Program
  • Increase Family & Patient Grant Program
  • Develop our Home Accessibility Program

$1.5M

From New Jersey State Budget

4,500

WALKERS

Walk ALS

In 2023, we held Walk events in New York City, Westchester, Northern New Jersey, Long Island, Jersey Shore, and Hudson Valley. We had more than 4,500 walkers and 470 teams join us throughout the spring and fall to raise awareness and funds in support of the local ALS community. Make sure to register for one of our six walks in 2024 at alswalks.org!

Thank You to Our Top Ten Fundraising Teams!

FOR THE LOVE OF JEMMA
TEAM BETTINA
TEAM YORKTEL
BEHANSTRONG
KATZ WALKERS
TEAM MIKE LEIDERMAN
PABLO’S PALS
TEAM JAY
OUR LOVE FOR MONA
WIN THE FIGHT

Lou Gehrig Legacy Gala

The Lou Gehrig Legacy Gala was held at Pier Sixty on Monday, November 6th. This year’s program celebrated the progress of ALS research and the evolution of the ways in which we care for those living with ALS. We also announced the transition of our organization to our new brand, ALS United Greater New York, unveiling our striking new logo, setting the stage for a memorable evening.

Under the guidance of Master of Ceremonies Jeremy Schaap, and special guest, Bob Costas, the event highlighted the presentation of prestigious awards, recognizing exceptional contributions to the ALS community. The 2023 Jacob K. Javits Lifetime Achievement Award was presented to Mitsubishi Tanabe Pharma America, for their groundbreaking work to bring forward a treatment for the ALS community and pave the way for future therapies. Our Lou Gehrig Sports Award was presented to Todd Zeile, a baseball legend who played for 16 seasons in the MLB. We proudly honored Jeffrey H. Loria, a long-time Gala Co-Chair and supporter of ALS United Greater New York with the Champion Award.

The remarkable women of Her ALS Story were honored with the esteemed Iron Horse Award for their collective strength and advocacy. Accepting the award on behalf of the group were Leah Stavenhagen, Desi Kessler, Ashley Rivera, and Kaitlin Gonzales. This recognition followed the touching video created by BBDO celebrating the network, which comprises over 100
inspiring women from across the United States and beyond. Initiated in April 2021 by Leah Stavenhagen, Her ALS Story emerged from a need for representation among young women who were diagnosed with ALS before the age 35, evolving from a group of twelve members to a thriving community rewriting the narrative of ALS. Through their unity and determination, these women offer hope and empowerment to others facing similar challenges.

Mark your calendar for next year’s gala – Monday, November 6, 2023, at Pier Sixty in New York.

Lou Gehrig Legacy Gala

$400,000

Raised by Team ALS

TEAM ALS

Over the course of 2023, Team ALS raised more than $400,000, thanks to the efforts of 93 athletes participating in the TCS New York City Marathon, United Airlines NYC Half, TD Five Boro Bike Tour, the NYC Triathlon, and individual endurance events. We are actively recruiting participants to join our 2024 Team ALS events. If you are interested in learning more, contact events@als-ny.org.

Community Fundraisers

Working with our local community to host their own fundraising events, many participants and volunteers raised ALS awareness and generated more than $360,000 in donations to support care services, advocacy, and research. Our top fundraisers included
the annual Iron Horse Party, several golf outings, pickleball games, and a hockey tournament. For more information on how to create your own Community Fundraiser, please contact events@als-ny.org.

$360,000

Raised by Community Fundraisers

$130,000

Raised at The Iron Horse Golf Classic

The ALS Iron Horse Golf Classic

More than 100 golfers joined us for the sixth annual outing on Monday, August 21, 2023, at Sands Point Golf Club in Sands Point, NY. The golfers enjoyed a great day on the course and helped raise over $130,000 for our programs and services. Save the date for the Seventh Annual ALS Iron Horse Golf Classic on August 12, 2024.

Lou Gehrig Day

The ALS community and Major League Baseball hit a homerun at the celebration of the third annual Lou Gehrig Day. In stadiums across the nation, teams offered people living with ALS and their families special game day experiences. ALS United Greater New York celebrated the legacy of Lou Gehrig with both the New York Mets and New York Yankees. We were joined by many friends and family at Citi Field on Friday, June 2nd for Lou Gehrig Day. On Tuesday, July 4th, friends joined us at the New York Yankees game to celebrate ALS Day and honor the legacy of Lou Gehrig on the 84th anniversary of his “Luckiest Man” speech. For information on 2023 Lou Gehrig Day, contact Meg Emery at memery@als-ny.org.

June 2nd

Lou Gehrig Day