Friends,
As we head into the final months of 2023, ALS Greater New York is poised for an exciting future, building upon its decades-long legacy as a trusted resource and emerging as one of the largest, local ALS patient service organizations in the nation. Our unwavering commitment to serving, advocating for, and empowering individuals affected by ALS is now more robust than ever. As science advances so too has our approach to care services, including support groups, TLC programs, education, and resources for those living with ALS and their families.
Moreover, our dedication to funding cutting-edge and groundbreaking research to find a cure for ALS remains steadfast. Through intensified collaboration among government agencies, the private sector, and medical professionals, we are determined to achieve substantial advancements in our crucial mission. As the landscape of ALS research and care continues to evolve, we pledge to do the same on behalf of those we serve in Greater New York.
Our ambitious initiatives and continued dedication to our community have created the perfect opportunity to update our look and name to reflect these changes. Stay tuned for some very exciting news about Greater New York in the weeks ahead!
For now, I invite you to take a moment to review our latest updates and activities
Thank you for joining us on this journey of hope and progress. Let's continue making a difference together!
Warmly,
Kristen Cocoman, President & CEO
Lou Gehrig Legacy Gala
We hope you will join us on Monday, November 6th at Pier Sixty in New York City for the annual Lou Gehrig Legacy Gala. This year's Legacy event will bring together our community to recognize not only the evolution of ALS Greater New York but also the incredible progress that we have seen in ALS research, the advancements in care, and the hope that we share for more treatments and a cure in the future. We will be honoring Mitsubishi Tanabe Pharma America with the Jacob K. Javits Lifetime Achievement Award. We will also be presenting the Champion Award to Jeffery H. Loria, and recognizing Her ALS Story, an inspirational group of women all diagnosed with ALS under the age of 35, in a special tribute. The evening program will be led by our Master of Ceremonies, Jeremy Schaap.
Care Services News
Home Visits
In accordance with the lifting of the federal COVID mandates, our Care Services team is excited to offer in-person home visits once again throughout all regions. We no longer require waivers or precautions, but safety remains our number one consideration. Any family who would like an in-person home visit is invited to request one from their individual Care Coordinator for scheduling. Virtual (ZOOM) visits remain a popular option. We are committed to offering multiple opportunities for families and our team to meet and interact.
Bereavement
At Greater New York, we are here to support families facing ALS. We understand that the emotional needs of our families don't just fade away after losing a loved one. That's why we're always available to offer continuous support to grieving families.
To better assist you during this difficult journey, we've expanded our bereavement services. We now offer a renewed program of bereavement communications that are sent at specific times, each one addressing different aspects of the healing process. Additionally, we offer a bi-weekly virtual bereavement group and a structured 5-part bereavement group twice a year with the next series beginning this month.
Our annual Ceremony of Remembrance takes place once a year and provides a special opportunity for people to come together in a shared ALS community and remember their loved ones. We're here for you every step of the way.
Clinician Forum
This month, we are excited to host our fourth multi-disciplinary Clinician Forum. These virtual gatherings offer a special platform for our clinic team members to collaborate, exchange knowledge, showcase best practices, and build connections, all for the betterment of our ALS community.
The expertise required for ALS therapists, social workers, nutritionists, and nurses is highly specialized. As a result, these forums bring together ALS experts from different regions to ensure that our care and treatment approaches are at the forefront of innovation. We take great pride in the dedication shown by our providers as they consistently invest their time in improving and sharing their skills.
Research News
On September 27, the Food and Drug Administration (FDA) convened a meeting of the Cellular, Tissue and Gene Therapies Advisory Committee (ADCOM) to review the Biologics License Application (BLA) for NurOwn®, its investigational mesenchymal stem cell therapy for the treatment of amyotrophic lateral sclerosis (ALS). The Committee voted that current data on NurOwn, Brainstorm Cell Therapeutics’ stromal cell therapy, is not sufficient in demonstrating efficacy as a treatment for patients with mild to moderate amyotrophic lateral sclerosis (ALS). However, on October 18th the FDA invited BrainStorm to an "expedited face-to-face meeting to discuss the path forward for NurOwn® as a treatment for amyotrophic lateral sclerosis (ALS). Brainstorm is withdrawing the Biologics License Application (BLA) for NurOwn. The decision to withdraw the BLA was coordinated with the FDA and is viewed by the FDA as a withdrawal without prejudice," according to a news release from BrainStorm.
Advocacy
Federal Advocacy
In August, the staff of Greater New York, along with individuals living with ALS and their caregivers, met with Representative Grace Meng from New York's 6th District, who serves on the House Appropriations Committee. In September, we also met with Senator Chuck Schumer, the Majority Leader from New York, to discuss our federal budget requests that hold significant importance for the ALS community.
Fortunately, on Saturday, September 30, 2023, Congress passed a continuing resolution (HR 5860). This resolution will maintain the current government spending levels for the next 45 days, preventing a government shutdown. Such a shutdown could have had severe repercussions for the ALS community.
We are committed to continuing our advocacy for ALS research funding and ensuring that individuals living with ALS retain access to vital resources and care. Our federal budget requests are listed below.
- ALS Research and Expanded Access Funding – Department of Health and Human Services (HHS, NIH, & FDA): Congress must provide at least $100 million to fully fund the ACT for ALS Act (Public Law 117-79) to help every American living with ALS.
- ALS Research Funding – National Institutes of Health (NIH): Congress must increase funding to support an expansion of ALS research at NIH.
- ALS Research Program (ALSRP) – Department of Defense (DOD): Congress must increase funding to $80 million for the ALSRP.
- National ALS Registry and Biorepository – Centers for Disease Control and Prevention (CDC): Congress must provide at least $15 million to the National ALS Registry and Biorepository to continue the critical work of identifying risk factors for ALS and research on prevention strategies, with an emphasis on ALS prevention in the military.
Events Wrap-up
Walk to Defeat ALS
We had a very successful Walk season, seeing more than 6,000 walkers participate in six Walks from May through October, and raising over $1.2 million. We are grateful to the many dedicated and visionary team captains, event participants, volunteers, sponsors, and ALS advocates. Your support, commitment, and fundraising efforts are key to helping us ensure that the ALS community continues to receive the highest quality care. Visit alswalks.org to become a leader in the fight against ALS.
Iron Horse Golf Classic
The ALS Iron Horse Golf Classic celebrated its sixth successful year at Sands Point Golf Club on Tuesday, August 21. More than 100 golfers raised $130,000 for Greater New York's services and programs while enjoying a great day on the course. Golf was followed by a buffet dinner, a silent auction, and a raffle with prizes that included Jet Blue airline tickets, New York Islanders tickets, and golf outings at some of the elite private courses in the Greater New York area. Golfers also had the opportunity to try for a Hole-In-One sponsored by BMW of Bayshore.
Giving
This is an important time of year to plan how you will be making your charitable gifts if you haven’t already done so. The ALS community relies on the generosity of your donations to continue the many vital resources and crucial research in the fight against ALS. It is with your support that we can help people living with ALS, their families, and the future of the disease.
There are many ways to make a tax-deductible gift to ALS Greater New York, and any gift can be made in honor or memory of a loved one.
Aside from cash donations, gifts can be made in the form of stock transfers, donor advised funds, grants from trusts or family foundations, workplace giving, employer matching funds, monthly gifts, or bequests and other planned giving vehicles.
For interest in making a gift at ALS-GNY or to learn more, please contact Vivian Banks, Director of Individual & Institutional Giving, at 212-720-3051 or vbanks@als-ny.org
Team ALS - TCS NYC Marathon
Sixty-five Team ALS runners will be participating in the 2023 TCS New York City Marathon on Sunday, November 5th. This year’s team is comprised of enthusiastic fundraisers hailing from various corners of the world, including New Zealand, Amsterdam, Ireland, California, and a significant representation from our local community in New York City. Among all the accomplished athletes of Team ALS, our runners are doctors, educators, veterans, and active-duty military personnel. Furthermore, our team boasts the unique bonds of two pairs of siblings who are running for close family members, and cherished best friends running in memory of their moms. Together, Team ALS has evolved into a remarkable international community united in our mission to support the cause and advance research for a cure for ALS.
We feel incredibly fortunate to have such an exceptional group of individuals standing with us in our battle against ALS. If you would like to donate to any of our 65 participating runners who are running with Team ALS click here.If you have any interest in joining Team ALS for the 2024 season, please email camato@als-ny.org.
Cheer on Team ALS participants at cheer stations along the 2023 TCS New York City Marathon course! Volunteers will be an important part of the day, cheering our participants to the finish line! Please contact Shelby Cicero at scicero@als-ny.org or 212-720-3043 for more information!