ALS United Greater New York Spring Newsletter 2024


Spring has arrived, and 2024 is off to a productive start! Here at ALS United Greater New York, we're embracing this season of growth and new beginnings with a number of activities and events where our community will once again have the opportunity to gather in support of one another.

  • May is ALS Awareness Month - join us in raising awareness all month long!
  • On May 4th, we kick off our first Walk ALS of the season in New York City at the South Street Seaport.
  • The 4th Annual Education and Resource Summit will take place on May 16th & 17th.
  • Join us for Lou Gehrig Awareness Day at Mets Citi Field
  • Sign up to be an ALS Advocate

Of course, we would be unable to provide our services without the ongoing support of our community. We're grateful for each and every one of you who has donated, raised funds, or advocated for our cause. Your support makes a real difference in the lives of people with ALS and their loved ones.

Thank you for your continued support and dedication to our cause.


Kristen Cocoman, President & CEO

Education and Resource Summit

ALS United Greater New York will be hosting a two-day virtual Education and Resource Summit on Thursday, May 16, and Friday, May 17. Hear from physicians, nurses, clinicians, patients, caregivers and ALS United staff, as they present on topics that will assist those living with ALS to navigate their journey. Sessions include Genetics, Nutritional Needs, Perspectives in Caregiving, Respiratory Considerations, Palliative Care, Voice Banking, and much more. Thank you to Mitsubishi Tanabe Pharma America, Inc. for sponsoring the event! This virtual summit is free and open to the entire ALS community. Please email for more information.

Care Services

ALS United Greater New York is committed to supporting our professional clinicians in sharing the best and most up to date evidence-based practices in the ALS field, so that our local ALS community can be assured that the clinical teams they work with set the bar in ALS multidisciplinary care. This approach to professional development is exemplified by our ongoing ALS Clinician Forum Series, which ALS United Greater New York coordinates on a regular basis. Bringing together allied health professionals from the 10 regional ALS clinics sponsored by ALS United Greater New York, the Forum has become an effective and well attended series where patient materials are created and shared, and common challenges are problem-solved communally. The group is made up of nurses, social workers, nutritionists, and physical & speech therapists, all of whom specialize in the field of ALS care. Each Forum begins with a short presentation on a topic of shared interest and then all disciplines have an opportunity for facilitated open breakout discussion. This platform for cross-sharing has resulted in implementation of innovative projects to benefit our local ALS community both at the clinic level as well as at the organizational level.

Research News

On April 4th, Amylyx announced that it would be withdrawing Relyvrio from the market due to lack of supporting evidence from its most recent clinical trial to evaluate its efficacy. New patients will no longer be able to initiate the treatment. However, current patients taking Relyvrio, who wish to continue, can transition to a free drug program, according to the company. We share in the disappointment of the ALS community, however, it is important to remember that while this is a challenging time, continued research and funding for ALS is crucial. We must not lose hope of finding a cure for ALS. ALS United Greater New York remains committed to advancing treatments for ALS and supporting the ALS community in every way possible.


Our Walk ALS season kicks off on Saturday, May 4, 2024, in New York City at South Street Seaport, Pier 16. Walks in Westchester, North Jersey, Jersey Shore, Long Island, and Hudson Valley are scheduled throughout 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.

Join us to Walk in Honor. Walk in Memory. Walk United to end ALS.


  • Walk ALS New York City: Saturday, May 4th - South Street Seaport, Pier 16
  • Walk ALS Westchester: Saturday, June 1st - Manhattanville College, Purchase, NY
  • Walk ALS North NJ: Sunday, June 9th - Saddle River County Park, Saddle Brook, NJ
  • Walk ALS Jersey Shore: Saturday, September 14th - Along the Promenade, Long Branch, NJ
  • Walk ALS Long Island : Saturday, September 21st - Eisenhower Park, East Meadow, NY
  • Walk ALS Hudson Valley: Sunday, October 20th - Walkway Over the Hudson, Highland, NY
On March 18th members from more than 40 Walk Teams from New York and New Jersey joined ALS United Greater New York at Madison Square Garden to Kick-Off the 2024 Walk season. We look forward to seeing you at one of our Walks this season!


Federal Advocacy

ALS United Greater New York, I AM ALS, and 18 other ALS organizations joined together to submit a letter to Congress advocating for FY25 funding priorities. In the letter, the organizations advocated for funding increases regarding the ACT for ALS, U.S. Department of Defense (DoD) ALS clinical research, National Institutes of Health (NIH) ALS research, ARPA-H, and the CDC's ALS Registry. These programs are critical to providing hope for our ALS community and ensuring the continued pursuit of new treatments and cures. We have urged Congress to act on these requests to provide immediate support to the entire ALS community and beyond.

ALS United Greater New York is excited to announce its partnership with I AM ALS for their Community Summit & Third Annual DC ALS Awareness Event in Washington, DC May 29 - June 1, 2024. You can attend virtually or in person and/or add your loved one’s name to a flag on the National Mall.

State Advocacy

Earlier this year New Jersey Governor Murphy proposed budgetary cuts that would result in a 66% reduction in ALS funding for those living in New Jersey. Both ALS United member organizations that represent those living with ALS in New Jersey testified to the Assembly and Senate Budget Committees urging lawmakers to keep the current funding level at last year's amount of $1.5M. If you live in New Jersey you can contact your legislator and urge them to keep the ALS funding level. The final budget is due June 30, 2024.

In contrast, earlier this year, Governor Hochul proposed $25M in the state budget for ALS Research. The budget passed on April 20 with $25M being allocated for grant awards to institutions and facilities to carry out research and treatment of ALS and funds allocated for services for those living with ALS. We thank the Governor and the Legislature for including this crucial funding for ALS Research in the state budget. These proposed investments will enable further innovation, research, and drug development.

ALS United Greater New York, in coalition with 13 other organizations, has been advocating for the support of New York bills S.5415a/A.2083a and S.1208/A.7415. These pieces of legislation address the discrimination that ALS patients, advocates, and their families have experienced around genetic testing. For those with familial ALS, genetic tests can be helpful for individuals and their physicians, guiding important health and life decisions. People should not be treated differently, discriminated against, or delay receiving a genetic test because they fear insurers will deny coverage or increase rates due to their genetics.


On Sunday, March 17th, 20 Team ALS runners completed the 2024 United Airlines NYC Half, a 13.1 miles journey from Brooklyn to Central Park. These runners raised over $56,000 that will go directly towards research, care services, and advocacy.

We are currently recruiting athletes to join Team ALS for the upcoming TD Five Boro Bike Tour on Sunday, May 5, as well as the TCS New York City Marathon on Sunday, November 3. Please contact Christopher Amato at to learn more about these upcoming races and other opportunities to join Team ALS.

Clinic Spotlight

Since 1996, the ALS Clinic at Mount Sinai Beth Israel Union Square has been a beacon of hope and support for individuals and families affected by ALS. As the first ALS certified center of excellence in New York, Mount Sinai is renowned for its integrated care approach, providing a wide array of services and compassionate support to those living with ALS.

At Mount Sinai, a highly experienced and accessible team is dedicated to providing patients with ALS expertise in diagnosis, optimal disease modifying and symptomatic treatments, and compassionate supportive care. The center's comprehensive, multidisciplinary ALS specialty clinic is held weekly, offering patients and their families access to a range of services in one location. From diagnosis to ongoing management, the clinic provides personalized care and support tailored to the unique needs of each individual and their family.

In addition to providing exceptional care the center, under the leadership of Dr. Scelsa and Dr. MacGowan along with their team, is committed advancing ALS research. Mount Sinai Beth Israel Union Square was a participating site in the recently concluded Sanofi Himalaya trial and has recently joined the Sean M. Healy & AMG Center for ALS Healey ALS Platform Trial contributing to the development of new treatments and therapies for ALS.

For individuals and families facing the challenges of ALS, Mt. Sinai stands as a guiding light. With its integrated care approach, multidisciplinary team, and commitment to research, Mount Sinai Beth Israel is dedicated to improving the lives of those affected by ALS and working towards a future free of this devastating disease.

Volunteer Spotlight

April is Volunteer Appreciation Month, and ALS United Greater New York celebrates the volunteers who generously donate their time and talents to support our local ALS community, this month, and every month.

Volunteers provide help and hope to people living with ALS and their loved ones in so many ways, including participating in our Walk ALS events; assisting with the pick-up and drop-off of ALS medical equipment and assistive devices; and advocating for legislation by sending emails, making phone calls, and posting on social media to help raise ALS awareness and support for our organization.

Meet Tori Kaufman, one of our dedicated Walk ALS Long Island volunteers at ALS United Greater New York.

“My grandpa passed away from ALS almost 10 years ago. After watching him deteriorate and seeing the effects it had on my grandma and my family in general, I knew finding a cure for ALS was something I wanted to get involved with. I want to see a day where no one has to suffer from this horrible disease. Volunteering makes me feel like I am honoring my grandpa and continuing his legacy by helping others in his shoes."

We deeply appreciate each and every volunteer for all they do to support people facing ALS. Join us in the fight against ALS by becoming a volunteer at ALS United Greater New York. Please contact Shelby Cicero at or 212.720.3043 to sign up to volunteer today.

Tori, as a toddler, is pictured with her grandfather.

LOU Gehrig AwarEness Events

You may know that ALS is also sometimes called Lou Gehrig's disease, named after the legendary New York Yankee baseball player who played from 1923 to 1939. Gehrig, known as "the Iron Horse," for his hitting prowess and durability, announced his retirement on July 4th, 1939, after being diagnosed with ALS. His farewell speech, now famous as the "Luckiest Man" speech, has become a poignant reminder of the disease's impact. Today, Major League Baseball recognizes Lou Gehrig Day on June 2nd and teams across the country honor Gehrig and raise awareness for ALS. In New York, the Mets, Yankees, and Brooklyn Cyclones will hold ALS Awareness days. Join us for these special events at Citi Field, Yankee Stadium, and Maimonides Park in Coney Island.

Contact for information on the two other events.

Save the Date for the ALS Iron Horse Golf Classic

Monday, August 12, 2024 at Sands Point Golf Club, Sands Point, NY

Save the date for the Lou Gehrig Legacy Gala

Tuesday, November 12, 2024 at Pier Sixty, New York City

Importance of giving

From research advancements to increasing care services, we are reaching new heights every day in the ongoing fight against ALS. Through your collective efforts and raising your voices together, we have moved closer to discovering effective treatments and ultimately finding a cure for ALS. If you are able to donate, we kindly encourage you to consider doing so today. Your generosity will enable us to increase crucial services to individuals with ALS and their families, further support innovative research initiatives, and continue advocating for policies that enhance the lives of those affected by this disease. We extend our heartfelt gratitude for your ongoing commitment to changing the future of ALS.

Together, We End ALS