Summer Newsletter 2025
Summer’s not over yet — and neither is our momentum in the fight against ALS. Your continued dedication helps drive advances in care, research, and advocacy, bringing us closer to a future without ALS.
In May, ALS Awareness Month lit up New York City and beyond with energy, visibility, and action — from Times Square displays to advocacy meetings in Albany and Washington, D.C. See all we did for ALS Awareness Month here.
In June and July, we celebrated ALS Awareness Day at baseball parks across New York, connecting with fans and sharing our mission with thousands. In August, our community came together once again for the 8th Annual Iron Horse Golf Classic and Long Island Family Connection Day, two events that brought supporters and families together in meaningful ways.
Looking ahead, there’s still so much to be part of this year. Join us for one of our three Fall WALK ALS events, cheer Team ALS at the TCS NYC Marathon, and attend the Lou Gehrig Legacy Gala on November 11th. Scroll down to learn more about these events and how your support continues to make a difference every day.
Together, we end ALS.
CARE SERVICES
On June 5th, ALS United Greater New York Care Service facilitators led a group discussion on the topic of Women and ALS. This was the first time a program was designed specifically for people who identify as women living with ALS. Years of experience have taught us that although ALS symptoms are universal among genders, women experience a unique set of challenges when it comes to living with the disease. These challenges take many forms, both physical and emotional.
Mary Ann Mertz, Care Coordinator and Clinic Coordinator at our Rutgers RWJ ALS Clinic, shared valuable insights on reproductive health and practical coping strategies for managing the disease on a day-to-day basis. Following her presentation, our Chief Care Services Officer, Debbie Schlossberg, led a structured discussion exploring topics such as identity, body image, and the ways ALS can affect personal relationships.
The discussion was lively and robust, with appreciation expressed by attendees. One participant immediately emailed and said she loved the group. When asked what specifically resonated with her, she replied, “You got to participate and listen to the other ladies and hear different perspectives...Miss Debbie posed questions out there for us to think about, which was very good, and then waited for us to open up. Definitely would do this again. We were on for an hour and 30 minutes, and there still wasn't enough time.”
WALK ALS
ALS United Greater New York had a solid start to the 2025 Walk ALS season. We hosted three Walks throughout the region this spring: Walk ALS New York City on Saturday, May 3rd, Walk ALS Westchester on Saturday, May 31st, and Walk ALS North Jersey on Sunday, June 8th.
There is still time to register for the upcoming fall Walks. You can join us on the following dates:
- Saturday, September 13th, in Long Branch, NJ, for Walk ALS Jersey Shore
- Saturday, September 20th, in East Meadow, NY, for Walk ALS Long Island
- Sunday, October 19th, in Highland, NY, for Walk ALS Hudson Valley
Join us to Walk in Honor. Walk in Memory.
Walk United to End ALS!
ALS Awareness at New York Ball Parks
ALS United Greater New York celebrated the legacy of Lou Gehrig with both the New York Yankees and the New York Mets in June and July. We were joined by many friends and family at Yankee Stadium on June 3rd to celebrate the 5th annual Lou Gehrig Day, which was commemorated across all Major League Baseball parks. On Wednesday, July 2nd, many friends joined us at Citi Field to cheer on the Mets while also recognizing ALS Awareness at the Ball Park. These events not only honor Lou Gehrig’s enduring legacy but also raise public awareness about ALS, helping to shine a spotlight on the urgent need for funding to advance research, improve care, and ultimately find a cure. We were proud to collaborate with I AM ALS, Her ALS Story, Mac Angels, and Target ALS for a pre-game on-field presentation at both games.
ADVOCACY
On July 4th, 2025, H.R. 1 was signed into law, making major changes to federal healthcare programs, including Medicaid, Medicare, and the Affordable Care Act (ACA). These changes will impact how millions of Americans, including people living with ALS and their caregivers, access care.
While the spending bill was passed, funding for critical ALS research still depends on the final appropriations process. The Senate Appropriations Committee recently continued support for key ALS programs, a positive step, but full funding is needed to help the 30,000 Americans living with ALS and their families. Veterans, who develop ALS at twice the rate of civilians, are especially at risk. Join us in urging Congress to support these requested funding levels for maximum impact:
- Department of Defense ALS Research: $80 million
- NIH ALS Research: $180 million
- ACT for ALS Act (full funding): $100 million
- CDC ALS Registry and Prevention: $15 million
While we continue to learn more about how this legislation will impact patient care and medical coverage, we encourage you to bring your questions to your ALS United care team members. Our social workers and nurses will guide you through changes while they advocate on your behalf.
Together, we will advocate for the care, dignity, and support that every family affected by ALS needs and deserves.
Iron Horse Golf Classic
The Eighth Annual ALS Iron Horse Golf Classic was held on Monday, August 11th, at Sands Point Golf Club in Sands Point, NY, raising vital funds for our care services, advocacy, and research. More than 110 golfers enjoyed a day of golf followed by a buffet dinner and raffle with prizes that included dining experiences and golf outings at some of the elite private courses in the Greater New York area. Thanks to the dedication and generosity of participants, the event not only brought the community together but also generated significant funding to help people living with ALS and their families.
Long Island Family Connection Day at Patrizia’s
On August 17th, ALS United Greater New York hosted Long Island Family Day at Patrizia’s in Hicksville, NY — a warm, casual gathering that brought together people living with ALS, their families, and participants in the upcoming Long Island WALK ALS. Families connected with the ALS Care Services team, shared stories, and learned more about resources and the upcoming Walk. The event also introduced new families to the community, fostering connections that will last well beyond the day itself.
Patrizia’s has been a steadfast supporter of ALS United Greater New York, hosting the Talk. Learn. Connect. (TLC) program earlier this year and welcoming guests annually to the Joseph Cotrone Cigar Dinner fundraiser. They also sponsor the Joseph Cotrone Holiday Dinner Program, which brings joy to families impacted by ALS during the holiday season, honoring Joseph’s legacy and his family’s ongoing generosity. From fundraisers to community gatherings, Patrizia’s continues to help strengthen the network of support for people living with ALS across Long Island.
TCS NYC Marathon - TEAM ALS
Each year, hundreds of thousands apply for the chance to run the iconic TCS New York City Marathon, but only a fraction secure a spot on the starting line. Some of those coveted bibs are proudly worn by members of Team ALS, a dedicated group of runners who combine their love of the sport with a powerful mission. As a Silver Level Charity Partner for the 2025 marathon on Sunday, November 2nd, ALS United Greater New York will have 65 runners (TEAM ALS) from across the country putting their passion into action, raising vital funds and awareness for people living with ALS. Keep an eye on our social media pages to see our TEAM ALS SPOTLIGHTS and learn how you can support these wonderful runners. If you want to join us to cheer on all of our runners on Marathon Day, please reach out to Charlotte Seto at cseto@als-ny.org for more information.
Legacy of Impact: The Lois Altman Estate Fund for ALS Support
Lois Altman was one of the most outgoing, personable, and honest individuals. Always glamorous, she was known for her chic style, love of dancing and laughter, and her warm, effervescent personality that drew people to her wherever she went. She had a deep passion for teaching children and touched countless lives with her kindness, generosity, and joy.
Through the establishment of the Lois Altman Estate Fund, ALS United of Greater New York is truly honored that the legacy of Lois Altman's kindness and generosity has continued to touch the lives of so many families impacted by ALS across Greater New York.
Over the past year, the Lois Altman Estate Fund for ALS Support has enabled ALS United Greater New York to sustain vital care services for people living with ALS and their families. With this generous funding, we served over 1,200 individuals, meeting their growing needs through personalized home visits, support groups, assistive technology, and direct services such as medical equipment loans and home accessibility grants. The fund also made it possible to support nearly 1,900 visits across eight certified ALS clinics, providing access to multidisciplinary care.
The Lois Altman Estate Fund also bolstered our research initiatives, helping us advance our commitment to finding a cure. It played a role in deepening collaborations with leading research networks, while also supporting important programs such as Prevent ALS and Expanded Access. These strategic efforts allowed ALS United Greater New York to drive innovation and accelerate drug development.
Through her estate, Lois’s legacy continues to reflect the same love, vibrancy, and compassion she shared throughout her life. Her impact on the ALS community will be felt for years to come, bringing hope, care, and progress to all who are touched by this disease.
For information on estate giving, contact Vivian Banks, Director of Individual and Institutional Giving at vbanks@als-ny.org or 212-720-3051.
Lou Gehrig Legacy Gala
This year’s Lou Gehrig Legacy Gala will be held on Tuesday, November 11th, at Pier Sixty in New York City. The Jacob K. Javits Lifetime Achievement Award will be presented to Thomas Pulley, with additional honorees to be announced soon. Over its 30+ year history, the Gala has recognized an extraordinary roster of leaders and advocates, including past awardees Dan Doctoroff, Pat LaFontaine, Sue Bird, Muhammad Ali, Michael Dowling, and Mitch Albom. The evening will feature a cocktail hour, dinner, and auctions, offering unique experiences and items for guests to enjoy while supporting our mission. Advance tickets and sponsorships can be purchased at LouGehrigLegacyGala.org. Please email events@als-ny.org for more information.
August: Make-a-Will Month
Now is the perfect time to establish or update your legacy giving plans. By including ALS United Greater New York in a will or trust, you are helping to create a legacy while supporting the ALS community in the future. Planned gifts can be designated to your program area of choice and made in honor or memory of a loved one. The planned contribution can be a dollar amount or a percentage of your estate. It may also ease the burden of taxes on surviving family members by providing estate tax savings. If you are interested to learn more, please contact Vivian Banks, Director of Individual & Institutional Giving at 212-720-3051 or vbanks@als-ny.org.