Dear Friends,
It’s hard to believe that fall is upon us and 2021 will soon come to a close. As I write you, I am still smiling from seeing and reconnecting with so many of you in person at our recent walks. This year, as we kept up with CDC COVID-19 safety recommendations, we moved our entire Walk to Defeat ALS program to the fall and I am so grateful many of you were able to participate! With the pandemic still very much a concern, we invited all of those participating in the Walk to Defeat program to "Walk Your Way", whether that was in person at one of several locations or from home. From Westchester to Long Island and Northern New Jersey you all proved the fight against ALS could not be stopped and we aren't done yet! You can participate in one of the two remaining walks at the Jersey Shore and in the Hudson Valley by clicking here.
With the vaccine becoming readily available in the late spring and through the summer, we were able to return to our office, our multidisciplinary clinics have seen a return to in person visits, and we have been able to deliver more items for our Equipment Loan Program in person. The last 18 months may have changed the way we operate, but it never slowed us down or stopped us from advancing our mission! Read about what we are planning next and hear from a few of those who are supporting our cause by clicking below for our full newsletter.
As the pandemic recedes, I am hopeful that your Holidays this coming season will be in person with friends, families, and loved ones.
Warmly,
Kristen Cocoman, President & CEO
2021 WAlk to Defeat ALS
Our Walk to Defeat ALS season kicked off on Sunday, September 19th with the Westchester Walk, followed by New York City, Long Island, and North Jersey. We could not be more grateful for everyone who came out in person and walked from home. This season we are offering "WALK YOUR WAY" which allows people to walk from our in-person locations or "Walk from Home".
There is still time to register for the remaining two of our in-person 2021 Walks to Defeat ALS. You can join us on Saturday, October 9 in Long Branch, NJ, or Sunday, October 17 in Highland, NY at the Walkway over the Hudson. Your support, commitment, and fundraising efforts are key to helping us UNLOCK ALS, and ensuring that the ALS community continues to receive the highest quality care. Visit alswalks.org to become a leader in the fight against ALS.
amylyx News
In September, Amylyx Pharmaceuticals, Inc. announced it intends to submit a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for AMX0035 (sodium phenylbutyrate (PB) and taurursodiol (TURSO)) for ALS. In September of 2020, The ALS Association and I AM ALS submitted over 50,000 signatures to the FDA calling on the agency to approve AMX0035, and in May of 2021, members of the ALS community spoke directly to FDA officials via Zoom. In July, Dr. Jinsy Andrews, ALS Association Trustee and physician at the Greater New York ALS Clinic at Columbia, gave testimony, along with I AM ALS co-founders Brian Wallach and Sandra Abrevaya, to the Subcommittee on Health of the Committee on Energy and Commerce which held a hybrid hearing, "The Path Forward: Advancing Treatments and Cures for Neurodegenerative Diseases."
The ALS Association's funding for AMX0035 was supported through donations received through the ALS Ice Bucket Challenge. In June of 2016, the Association provided Amylyx with a $750,000 grant for a clinical trial pilot, and in July of 2016, the Association provided the Northeast ALS Consortium (NEALS) with a $1.46 million grant to help pay for the phase 2 clinical trial of AMX0035. The Association has also provided regulatory, medical, and research counsel to help expedite the progress of AMX0035.
Whatever it Takes
As is true for so many with ALS, the symptoms appeared out of nowhere. Kerry Falzone’s father, Andy, an avid mountain bike rider, self-taught guitar player, and long-time carpenter was diagnosed with Bulbar Onset ALS at age 62 in January 2021. Kerry, a marketing expert with a husband and two small children, knew she could not idly stand by and watch this disease devastate her father without taking action.
She immediately started researching the disease learning all she could and became an advocate in the fight to end ALS. But, that wasn’t enough. She jumped at the chance to raise funds for the Greater New York Chapter, by creating a walk team named for her father. In her first year as Team Captain, “Andy Strong” has raised over $22,000. The Walk to Defeat ALS program fuels the Chapter’s search for effective treatments and a cure while offering care services free of charge for people living with ALS and their families.
If there is anything Kerry wants people to know, it is that the ALS community is a strong one. Kerry states, "that even during these still unprecedented times, I am in awe of the amount of support we have received from family members, friends, and even strangers." Kerry adds that this community needs more advocates to join together and write to their congress people about ACT for ALS. With your help, we can fight for those living with ALS to have access to life-extending drugs and that more dollars can be used to further research into this devastating disease. "You never think it could affect you until it does." But, Kerry, like many of us, is determined to do whatever it takes to end ALS.
Clinic Spotlight
The Mount Sinai Beth Israel/Mount Sinai Downtown Union Square /ALS Association Greater New York Chapter ALS Center was created and co-founded by Dr. Stephen Scelsa in 1997, making it one of the first ALSA* clinics in the country. Dr. Scelsa, a native New Yorker, attended St. Lawrence University and S.U.N.Y. Health Science Center at Brooklyn with an eventual residency at The Albert Einstein College where he went on to become the Chief Resident of Neurology.
The Center was certified by The ALS Association in 2000 and became part of the Mount Sinai Health System in 2013. Because of his strong interest in conducting clinical trials in ALS and other neuromuscular diseases, Dr. Scelsa became an active member of the North Eastern ALS Consortium (NEALS). Since 2003, the center has gained national recognition for participation in ALS clinical trials.
As Director of the Neurology Department and ALS Center and Professor of Neurology, The Icahn School of Medicine, Dr. Scelsa has received four NIH consortium grants for clinical trials in ALS patients. A prospective, multicenter, randomized, double-blind, placebo-controlled, parallel groups, phase 3 study to compare the efficacy and safety of masitinib in combination with Riluzole versus placebo in combination with Riluzole in the treatment of patients suffering from Amyotrophic Lateral Sclerosis (ALS) is scheduled to begin recruitment in October 2021.
The Center is also participating in a new study to validate a new functional scale for PLS (primary lateral sclerosis) with Dr. Mitsumoto at Columbia University. PLS is an often neglected disease in clinical trials and Dr. Scelsa is very interested in developing new clinical trials in PLS and says this project provides a great opportunity.
Dr. Scelsa and Dr. Geetha Kanakeswaran co-direct the multidisciplinary treatment team that includes Neurology, Nursing, Respiratory Therapy, Physical Therapy, Occupational Therapy, Speech Pathology, Social Work, and Nutrition/Dietitian. Since 1998, The ALS Association’s nationwide network of Certified Treatment Centers of Excellence has provided evidence-based, multidisciplinary ALS care and services in a supportive atmosphere. The Greater New York Chapter is proud to partner with Dr. Scelsa and the team at Mt. Sinai as well as with our entire network of ALS clinics throughout the region.
ALS Advocacy
On July 28, 2021, the Subcommittee on Health of the Committee on Energy and Commerce held a hybrid hearing that included both in-person (Washington D.C.) and remote attendance entitled, "The Path Forward: Advancing Treatments and Cures for Neurodegenerative Diseases."
Dr. Jinsy Andrews, Director of Neuromuscular Clinical Trials at Columbia University, and Brian Wallach, Co-Founder I AM ALS both gave testimony. Video of the hearing is available here.
Accelerating Access to Critical Therapies for ALS Act (ACT for ALS). This legislation, re-introduced in March of 2021, continues to gain steam with over 320 co-sponsors in the House and 30 in the Senate. ACT for ALS will authorize $100 million to implement the legislation. It would also create a public-private partnership for rare neurodegenerative diseases at Health and Human Services to streamline the development and approval of new therapies and establishes a rare neurodegenerative grant program at the Federal Drug Adminstration. Send a letter to your members of Congress and ask them to cosponsor the ACT for ALS Act by clicking here.
EvenTS
The Lou Gehrig Legacy Gala - We hope you will join us on Monday, November 8th for a virtual celebration at this year’s Lou Gehrig Legacy Gala. Packed with exciting content, and led by our Master of Ceremonies, Jeremy Schaap, we will be honoring Kim Ng, Miami Marlins General Manager, and Jackie Kelman Bisbee, Founding Partner of Park Pictures. There will also be a special tribute video and Champion Award presentation in memory of Christopher Pendergast and Pat Quinn.
TCS New York City Marathon – The Greater New York Chapter is thrilled to partner with the 2021 TCS New York City Marathon, taking place on November 7th. This year's event will mark the 50th anniversary of the marathon, which Team ALS runners have participated in since 2010. The ALS Association Greater New York Chapter will be among more than 400 official charity partners enabling thousands of runners to take on the world's most popular marathon while adding meaning to their miles. If you would like to make a donation to any of our 50 participating runners running with Team ALS, click here.
Iron Horse Golf Classic - The 2021 ALS Iron Horse Golf Classic enjoyed its fourth successful year on Thursday, August 12, at Sands Point Golf Club in Sands Point, NY. More than 80 golfers enjoyed a great day on the course, followed by a buffet dinner along with a silent auction and raffle with prizes that included Jet Blue tickets, golf outings at some of the elite private courses in the Greater New York area, and a Hole-In-One sponsored by Audi for a free lease of a car.
support Groups
The ALS Association Greater New York Chapter offers monthly online support groups. Each month support groups provide an opportunity for those living with the disease, family members, caregivers, and friends to come together to share stories, hear the experiences of others and receive valuable information. Join us this fall for sessions on Nutrition, How Music Can Help in Challenging Times, and Emergency Preparedness. Please continue to check our website for the monthly schedule of topics and speakers.
Sweet Partnership
A special thank you to Pooja Bavishi, Founder and CEO of Malai, a Brooklyn based ice cream company that draws inspiration from South Asian inspired whole ingredients and unexpected twists on classics, for donating the profits of their special Diwali Celebration pint, Mayamasi's Shrikhand Frozen Yogurt, to the ALS Association Greater New York Chapter.
Pooja’s aunt, Maya, was diagnosed with ALS, and this flavor was crafted in her honor. The featured pint is a rich, sweet yogurt flavored with amber threads of saffron and sprinkled with sliced almonds. Pooja notes that she “founded Malai because desserts bring people joy, and I wanted to be in the business of delivering happiness.” She continues to craft all of Malai's flavors and distributes them through various channels, including a storefront in Brooklyn, selling pints nationwide in grocery stores, and online. You can support the Greater New York Chapter and enjoy a little sweetness by ordering the Diwali Celebration box, which includes Mayamasi's Shrikhand Frozen Yogurt, or drop by the shop and order a pint! There is limited availability (10/4-11/4) so act fast!
benefits of giving
Did you know that there are a variety of ways to donate to The ALS Association Greater New York Chapter, such as gifts of stock or through a tax-free IRA Charitable Rollover? All gifts directly support care services, research, and advocacy programs – and any gift can be made in memorial or in honor of a loved one.
The CARES Act Charitable Contribution has been extended for 2021. This historic occurrence allows donors to give more while providing tax benefits to themselves as well.
- For individuals who itemize deductions, the cash contributions limit has been raised to 100% of your adjusted gross income, increased previously from 60%. This means donors can give more charitable contributions, before reaching the full extent of their AGI.
- For non-itemizers, charitable deductions can be claimed up to $300 for cash donations or $600 for those who file joint returns. This provision means that you could increase your philanthropic budget and still recover a portion of it in tax savings while helping non-profits like ALSA-GNY.
- These enhanced tax benefits apply to corporations as well. Corporations can continue to deduct charitable gifts up to 25% of taxable income, an increase from 10% before the CARES Act.
We encourage you to speak with your financial advisors, as well as reach out to us for questions. For information in learning more, please contact Vivian Banks, Director of Individual & Institutional Giving, at 212-720-3051 or vbanks@als-ny.org.
We are proud to announce that The ALS Association Greater New York Chapter has earned its eighth consecutive 4-star rating from Charity Navigator! That means we've taken steps to be accountable, transparent, & financially healthy. Only 6% of the charities evaluated have received at least eight consecutive 4-star evaluations. Check out our Charity Navigator profile to learn more!