I am delighted to join The ALS Association Greater New York Chapter as your President & CEO.
I, like you, have many reasons to want to be a part of this vibrant organization. I lost my grandfather to this devastating disease. I, like many of you, have cried as I held hands with friends suffering in ways you know all too well.
But I am also filled with hope.
This year marks the 20th anniversary since the founding of The ALS Association Greater New York Chapter. On behalf of the Board and staff of the Chapter, I extend much heartfelt appreciation for all of the support we have received from the ALS community over the past two decades.
Twenty years ago the Chapter began with a few dedicated volunteers, who formed a support group in Manhattan, seeking to care for their loved ones living with ALS and share information and resources to help others. Today the Greater New York Chapter serves more than 750 patients in 26 counties throughout the greater New York / New Jersey region.
In the two decades since our founding, thanks to the amazing dedication of so many donors, volunteers, and exceptional staff, the Chapter now supports four multidisciplinary ALS clinics, hosts seven monthly support groups, organizes seven Walks to Defeat ALS, and maintains three equipment loan warehouses, loaning nearly 2,500 pieces of durable medical and augmentative communications equipment to our patients free of charge in the last year alone.
We have a committed team of healthcare professionals — nurses, social workers, assistive technologists — providing essential support and services to patients, families, and caregivers. These services span four regions throughout the metropolitan area — New York City, Long Island, Westchester County & the Hudson Valley, and Northern & Central New Jersey.
We continue to advocate in Washington, DC for greater support from our Federal government. Over the years we have successfully advocated for a waiver of the 24-month waiting period for Medicare benefits, changed regulations at the Department of Veterans Affairs to recognize ALS as a military service-connected disease, and have been at the forefront of the establishment of a National ALS Registry to better understand how many Americans are affected by ALS and why.
Our Chapter has contributed more than $7 million toward cutting-edge ALS research, which has resulted in some significant advances. We have funded the early work of some of today’s top ALS scientists in areas including stem cells, genetics, biomarkers, drug development, and clinical research. We are most proud of The Milton Safenowitz Post-Doctoral ALS Fellowship Program, which was established ten years ago to invest in young scientists to ensure growth and advancement in the field of ALS research for the future. We are encouraged that we are closer than ever to finding a meaningful treatment and a cure.
As we move forward, we ask you to re-double your efforts and become a Partner in the fight to end ALS and renew your generous support. Your contributions will help us continue the work of caring for those living with Lou Gehrig’s Disease, provide caregivers with the tools they need, enhance our Advocacy efforts, and continue critical funding for scientific research to bring about an effective treatment and a cure for ALS. Every gift makes a difference.
While we mark this milestone anniversary, we continue to look ahead toward a world without ALS. Twenty years have come and gone so fast, and along the way we have lost many friends to this terrible disease, but our resolve remains strong, as we honor their memory by continuing to fight ALS every day. We are so grateful for your support. Together, we have and will continue to improve the lives of people with ALS in our community.
President & CEO
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