Our Impact in 2022
As we embark on our journey into 2023, we would like to take the opportunity to reflect on all the successes in the past year that have been made possible because of you. 2022 was a significant year of growth and together we are truly making strides in the fight against ALS.
We have seen research advancements, and major advocacy wins, and we have generated an increase in care service offerings for the Greater New York ALS community.
Below you will read about the accomplishments of 2022 and our plans for the year to come. Customized program updates are detailed including respite and ramp grants, equipment loans, and new support groups. Our dedicated team of nurses, social workers, and assistive technology specialists continue to provide seamless care to people living with ALS and their families who rely on these vital resources. We are working harder than ever to serve this community on all fronts and are eager to keep building upon our shared successes.
One of our first endeavors for 2023 is launching our brand new website that provides more information, access to educational videos, and ways to become involved with ALS Greater New York.
People with ALS Served
Care Service Successes
In 2022, The Greater New York Chapter continued our hybrid programs and services while also expanding our offerings. As our team continued providing support through virtual platforms, we unveiled our new program, T.L.C. (Talk. Learn. Connect.). T.L.C. offerings are chapter-wide, virtual presentations from a variety of ALS experts as well as opportunities for specified audiences (ie. Newly Diagnosed) to convene in order to share topics of mutual interest. T.L.C., together with our expanded grant offerings and ongoing continuity of care to over 1,000 patients, has made 2022 our busiest year!
James J. Peters Department of Veteran Affairs Medical Center Certification
We are proud to announce that the James J. Peters Department of Veteran Affairs Medical Center has successfully received certification as a “Treatment Center of Excellence” from the ALS Association. To commemorate this milestone, the association awarded Dr. Marinella Galea, Chief of Spinal Cord Injury and Disorders, Director of the ALS Clinic, and Co-Director of MS Regional Center at The James J. Peters VAMC on October 20, with a plaque marking its designation.
We are proud of the longstanding commitment that the Bronx VA's ALS Center and our chapter have had together providing excellent care and supportive services to people with ALS in the community and beyond, said Kristen Cocoman, President & CEO of The ALS Association Greater New York Chapter.
To become certified as a Certified Treatment Center of Excellence, each clinic must meet The ALS Association's clinical care and treatment standards, based on AAN Practice Parameters, participate in ALS-related research, and successfully complete a comprehensive site review.
Pieces of Equipment Delivered
The Greater New York Chapter provides short-term and extended loans of recommended Durable Medical equipment and Assistive Technology to individuals with ALS. Access to loaned equipment may be necessary because of delays in the acquisition, or some items may not be covered by insurance. In either circumstance, the Equipment Loan Program provides equipment at no cost to the recipient or family. We partnered with vendors to deliver 700 pieces of Durable Medical Equipment and Assistive Communication Equipment to our families.
Virtual Education Summit
In May of 2022, over 250 members of the ALS community gathered online for the second annual ALS Greater New York Education and Resource Summit. Building upon last year’s success, it was important to the chapter that we continue to provide educational resources to the ALS community. This ensured that we remain at the forefront of thought leadership and the dissemination of cutting-edge tools to the ALS community. Fourteen sessions took place over two days and featured presentations from leading neurologists and experts working in the ALS space. Topics included: Genetics in ALS, Nutritional Considerations, Intimacy and ALS, Advancements in ALS Research, and Clinical Trials among others. All videos from the Summit are available on the Education & Resources page.
Education Summit Participants
From Ice Bucket Challenge Invested in the Development of AMX0035
New Drug Approval
The U.S. Food and Drug Administration approved AMX0035 (Relyvrio) for the treatment of ALS in September 2022. Twice in 2022, ALS community advocates testified before the FDA’s advisory committee, imploring them to approve AMX0035. After the advisory committee narrowly voted against the approval, The ALS Association circulated a letter signed by several dozen leading ALS clinicians telling the FDA they want to be able to discuss AMX0035 with their patients as a viable treatment option for ALS. When the FDA Advisory Committee reconvened, we again testified before the committee on the need for urgency. The committee finally voted unanimously to recommend approving the drug in September 2022.
The ALS Association supported the development of AMX0035 with a $2.2 million grant in 2016 – one of the first research grants funded with ALS Ice Bucket Challenge donations. As a standard provision in philanthropic support for drug development, the grant included a repayment provision allowing the Association to recover up to 150 percent of its support, or up to $3.3 million. The funds will be reinvested into ongoing global research into treatments and, ultimately, a cure.
People like you are pivotal to pursuing public policies that can assist those living with ALS. This past year advocates delivered more than 16,000 messages to policymakers and hosted more than 500 virtual meetings with lawmakers across the country.
The Justice for Veterans Act - Military veterans are at a greater risk of being diagnosed with ALS than those who did not serve in the military and therefore ALS is considered a service-connected disease. For veterans who die because of a service-related disease, their families are eligible for an increased compensation benefit. However, to be eligible, the veteran must live with the service-related disease for a period of 8 years. This is unfair to the families of veterans with ALS since life expectancy upon diagnosis is between 2-5 years. Advocacy this year increased support for The Justice for ALS Veterans Act which was introduced in the House and Senate in 2021 and would make it possible for surviving spouses of veterans who die from ALS to receive the increased Dependency and Indemnity Compensation regardless of how long their loved one lived with the disease after diagnosis.
Support of Copay Accumulator Adjustment Legislation - ALS Greater New York stood with over 65 health organizations in supporting New York Legislation S.5299/A.1741, which would significantly help reduce out-of-pocket healthcare costs for our community. The copays associated with acquiring them significantly add to this crushing financial burden. ALS Greater New York supported all efforts to prohibit of copay accumulator adjustment programs. The legislation passed both houses and was signed by Governor Hochul on December 23rd.
State Funding – We continued to receive state funding from both New York and New Jersey state budgets for 2022. Thanks to the testimony of Al Jeffries of New Jersey, an advocate, and person living with ALS, our New Jersey funding stayed steady at $1 million dollars. This funding allowed the Chapter to:
- Expand outreach to ALS Community
- Grow Equipment Loan Program
- Increase Family & Patient Grant Program
- Develop our Home Accessibility Program
Messaged delivered to policymakers
Raised by The Walk to Defeat ALS
Walk to Defeat ALS
The Greater New York Chapter’s 2022 Walk to Defeat ALS Program was a big success, thanks to the dedication of the walkers. We had more than 4,000 walkers and 470 teams participate in all six walks throughout the spring and fall. Make sure to register for one of our six walks in 2023 at alswalks.org starting February 1, 2023.
Thank You to Our Top Ten Fundraising Teams!
For the Love of Jemma
Team Mike Leiderman
Win the Fight
Stormin 4 Norman
Lou Gehrig Legacy Gala
On Monday, November 7, 2022, we hosted The Lou Gehrig Legacy Gala in person for the first time since 2019. This year’s program was both moving and inspirational, with a focus on the National Hockey League, a community that has experienced the devastation of an ALS diagnosis. The evening was emceed by Q104.3 radio personality and Chapter Board member Ken Dashow. The Jacob K. Javits Lifetime Achievement Award was presented to Gary Bettman, Commissioner of the National Hockey League. Our Lou Gehrig Sports Awards were given to New York Yankees pitcher Nestor Cortes, and NHL legends Pat LaFontaine and Henrik Lundqvist. We posthumously honored Rod Gilbert, former New York Rangers player, and a 2003 Lou Gehrig Sports Award recipient, with the Champion Award. We were privileged to view a special tribute video of Chris Tschupp and hear from his family as they described his life living with ALS. Proceeds from The Lou Gehrig Legacy Gala allow us to fund the most promising research initiatives and provide the highest quality support services for people with ALS and their families in the Greater New York area. Mark your calendar for next year’s gala – Monday, November 6, 2023, at Pier Sixty in New York.
Lou Gehrig Legacy Gala
Raised by Team ALS
Greater New York was a Silver Level Charity Partner of the TCS New York City Marathon on November 6, 2022. A team of 61 runners from across the country raised nearly $340,000 to support the ALS community. We are actively recruiting for the upcoming Team ALS events including the NYC Half Marathon in March, the TD Five-Boro Bike Tour in May, and the NYC Marathon in November. If you are interested in learning more, contact email@example.com.
Every year many third-party community fundraisers are hosted to benefit ALS Greater New York. In 2022, these fundraisers raised more than $520,000 benefiting Greater New York. Our top fundraisers included the annual Iron Horse Party in May, which raised more than $100,000, several golf outings, and a community walk. For more information on how to create your own Community Fundraiser, please contact firstname.lastname@example.org.
Raised by Community Fundraisers
Raised at The Iron Horse Golf Classic
The ALS Iron Horse Golf Classic
More than 100 golfers enjoyed the fifth successful outing on Tuesday, August 9, 2022, at Sands Point Golf Club in Sands Point, NY. They enjoyed a great day on the course and helped raise over $125,000 toward our programs and services. Save the date for the Sixth Annual ALS Iron Horse Golf Classic on August 22, 2023.
Lou Gehrig Day
Major League Baseball officially designated June 2nd as Lou Gehrig Day. This date now and forever honors Lou’s legacy on the field and raises awareness about ALS throughout the world. We were proud to celebrate the 2nd annual Lou Gehrig Day with over 400 friends and family at Yankee Stadium. We were also joined by ALS Ride for Life for a pregame on-field presentation. For information on 2023 Lou Gehrig Day, contact Meg Emery at email@example.com.
Lou Gehrig Day