Dear Friends,
It’s hard to believe that Fall is upon us and it’s been seven months since COVID-19 changed our lives. Throughout these past many months, we have been working tirelessly to ensure that every family we serve continues to receive our complete and uninterrupted support.
We recognize how stressful this time has been on our community and our caregivers, so that is why we want to give a special thanks to all those who work so tirelessly for their loved ones. In just a few short weeks we will mark the beginning of November and National Family Caregivers Month, a time to recognize all the love and care that these amazing individuals provide. They do not ask for their role, but they embrace it courageously out of love for a family member, spouse or friend with the disease.
Family Caregivers often struggle to ask for help out of fear of burdening other friends and loved ones. While they often suffer higher rates of negative health issues, they also say they realize a sense of purpose and meaning in life by providing care. The COVID-19 pandemic has made supporting caregivers more challenging than ever. Because of the potential for contagion, in-home visits by skilled care providers or volunteers are no longer options for many caregivers now assuming around-the-clock care without respite.
Over the next few months, we look forward to sharing information on caregiver support, and ways we can all help the thousands of selfless family caregivers during this unprecedented time of crisis and isolation. If you have a family caregiver story you’d like to share, please send it to us at als@als-ny.org.
There is no doubt that the pandemic will continue to challenge each of us but we remain committed more than ever to meeting the needs of families fighting ALS.
With Gratitude,
Kristen Cocoman, CEO & President
important Research Update
Amylyx, a Massachusetts-based pharmaceutical company, published the results of a multi-center placebo-controlled double-blind phase 2 trial of its compound AMX0035 on September 3, 2020 in the New England Journal of Medicine. The results of the trial were very promising – people with ALS receiving AMX0035 experienced a significantly slower decline in disease progression, compared to those on a placebo. Additionally, AMX0035 was safe and well-tolerated indicating a good benefit/risk consideration for people with ALS.
We are optimistic that AMX0035 can help people with ALS. We believe the data makes a clear and compelling case that it should be made available to people with ALS as soon as possible. We look forward to working with Amylyx, the FDA, and the ALS community to make that happen.
Since the FDA has emphasized the appropriateness of exercising flexibility when dealing with serious diseases and unmet medical needs, there is no reason to withhold this promising drug from the ALS community. We are asking the FDA and Amylyx to work together to bring AMX0035 to people with ALS as soon as possible. Join us by signing the petition.
Newly Diagnosed Day
A diagnosis of ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease can be overwhelming. On Saturday, September 12, 2020, we held our first all-virtual, Newly Diagnosed Day event. In previous years, we held these informational sessions regionally and in-person. Due to COVID-19 restrictions on large gatherings, this year our full program was presented via Zoom. New families learned about the national and local ALS Association resources and tools to live with ALS. Along with several guest speakers, the Care Services department welcomed our newly diagnosed attendees into the “ALS GNY Chapter family”.
Speakers from our ALS multidisciplinary treatment centers of excellence, including internationally recognized ALS researcher and neurologist, Jinsy Andrews, MD, MSc, presented on several topics including ALS research, physical therapy, coping with an ALS diagnosis, ALS Greater New York programs and services, nutrition, and occupational therapy.
We plan to host another Newly Diagnosed in early 2021. There is never a charge to attend an ALS-GNY Care Services community event, but registration is required.
On behalf of The ALS Association Greater New York Chapter, we are grateful for the unwavering support of our event coordinators and experienced ALS-GNY staff professionals along with hospital partners and guest speakers from Columbia University Medical Center, Hospital for Special Surgery, Mount Sinai Downtown, Northwell Health, Rutgers Robert Wood Johnson Medical School and Stony Brook University Hospital.
Support Groups
Our in-person support groups continue to be by telephone and/or web based for the safety of our community. You can participate in a support group from your own home or anywhere with internet access. Our virtual support groups are available for patients & caregivers each month. They are also a convenient way to connect throughout the month. Contact Charisse Viscomi-Santos at 201-926-5374 or csantos@als-ny.org for more information.
Lou Gehrig LEgacy Gala
We hope you’ll join us on November 9th for a virtual celebration at this year’s Lou Gehrig Legacy Gala. Packed with exciting content, this evening’s celebration will be a headliner conversation between Cal Ripken Jr. and Jeremy Schaap. Go behind the scenes as together they commemorate the 25th Anniversary of Cal breaking Lou Gehrig’s consecutive game streak.
Giving to impact our mission
There are many ways to help people with ALS and their families, as well as the future of the disease. Gifts of all types directly impact the mission for our ALS community and research projects. These gifts can include stock or through a tax free IRA Charitable Rollover. Any gift can be made in memory or in honor of a loved one.
- New Charitable Deductions for Non-Itemizers: Under the CARES Act, taxpayers who do not itemize their deductions will be able to claim a charitable deduction of up to $300 for cash donations made in 2020. This means you could add an additional $300 to your donation budget this year, recover a portion of it in tax savings, and help non-profits, like ALSA-GNY, address current challenges during these extraordinary times.
- Charitable Deduction Limits Modified for Individuals: The CARES Act allows you to deduct a large cash gift to the extent of your entire adjusted gross income, compared to last year deduction limits were only 60% of your AGI.
For interest in making a gift or learning more, please contact Vivian Banks, Director of Individual & Institutional Giving, at 212-720-3051 or vbanks@als-ny.org
100 Miles Closer to A Cure
With many of our events changing to virtual platforms, we wanted innovative and exciting ways to make the most of this new reality. The Greater New York Chapter is proud to have taken the lead and started the Run 100 Miles in September Facebook Challenge. The month of September saw more than 1,400 people from all over our region commit to running 100 miles while raising funds and awareness for the Greater New York Chapter. They raised over $65,000!
Advocacy Update
In late August we reached our goal of securing more than half of the House and Senate to cosponsor the ALS Disability Insurance Access Act. The ALS Disability Insurance Access Act (S. 578/ H.R. 1407) would eliminate the five-month Social Security Disability Insurance (SSDI) waiting period for people with ALS. Under current law, people with ALS who qualify for SSDI must wait five months before receiving those benefits. With this momentum we have a real chance at moving this critical legislation, but we need congressional leaders to act urgently in support of people living with ALS.
Northwell ALS Clinic Tour with Former NY State Senator Flanagan
In September, Kristen Cocoman, CEO & President of The ALS Association Greater New York Chapter, and Dr. Anthony Geraci, Director of Neuromuscular Medicine at the Northwell Health Neuroscience Institute were proud to escort former New York Senator John Flanagan around the Northwell Health ALS clinic.
As the newly appointed vice president of regional government affairs for Northwell’s Eastern Region, and after serving nearly 34 years as an elected official in the New York State Legislature, former NY State Senator John Flanagan was very impressed with the care the Center provides. Prior to his new position, Mr. Flanagan was instrumental in the Chapter receiving State grants for our services to those living with ALS.
Make a plan to vote
Election Day is Tuesday, November 3, 2020. Because of COVID-19 concerns some states may have changed rules and regulations regarding polling places and absentee ballots. For instance, if you would like to vote by mail in New York State you must request an absentee ballot and one will be sent to you.
For those who may require assistance in voting federal law requires voters can receive that help, whether it’s a poll worker or a friend/family member. You may also consider contacting your local elections office about voting options. The election office can provide information about accessible machines and other voting methods. On election day, alert poll workers about your accessibility needs.
In Their Own Words
Many in the Greater New York ALS family are probably familiar with the Ride for Life. Started in the late 1990’s by Chris Pendergrast and supporters, the ALS Ride for Life is an annual event raising funds for a cure, helping patients and creating awareness of this fatal disease. This summer Chris, along with his wife Christine, published Blink Spoken Here: Tales from a Journey Within (Apprentice House Press).
Chris wrote the book with an eye-controlled device because he doesn’t have the use of his hands or his voice. Diagnosed in 1993, Chris has written on his coming to terms with the disease and on the Ride for Life, which began in 1998 as the Ride to Congress.
“Speech is freedom. Communication is the connection to the outside world. We all have a right to be heard … I want to be able to speak, even if it is only one blink at a time.”
Several other people living with ALS have also shared their experiences through the written word, whether on Twitter, blogs or books.
Sonal Shah’s book, "My Life, Legacy, and ALS," shares one woman’s remarkable story of living with the devastating diagnosis also known as Lou Gehrig’s disease. Born and raised in India, Sonal Shah eventually moved to the United States, where she enjoyed a career, married, and had a daughter. She actively volunteered in the community and even ran for local office. Planning for retirement, life was good for Shah—until she suddenly faced the shattering news that she had ALS.
Jeremy Schreiber's new book, "The Invisible Nation", walks the reader through his journey from being a picture of perfect health, to fully dependent on his family after being diagnosed with ALS. Along the way, he experiences the devastation of this disease, abandonment by his wife, and a world built to shun people with disabilities. It's not all doom and gloom. He finds love, support, and a powerful purpose to share with the world. A sneak peak is available here. He blogs about his life, health and wellness at www.neversayinvisible.com.
Sarajane Giere's book "My Pilot: A Story of War, Love, and ALS" follows Bernard and Sarajane Giere from their time as newlyweds, through Bernie's service in the Vietnam War and ultimately to Bernie's death. Using her own frank and often heart-wrenching words and letters written from her husband, Sarajane takes the reader on a journey through war, love, and the trials of a deadly disease. It is set to be released Veterans Day Week 2020 by Imzadi Publishing.
The materials and Web sites referenced and/or linked from The ALS Association Greater New York Chapter are provided for information purposes only.
Credits:
Created with an image by Markus Winkler - "Update"