Serving people with ALS and their caregivers in times of crisis
We must take a stand against the threat of COVID-19 to our ALS community. When a common cold is a detriment to the health and safety of a person with ALS, a virus like COVID-19 puts our entire community at risk. We made a promise to the hundreds of people impacted by ALS in the greater New York region and we must rise to keep them safe and maintain a sense of hope in this time of crisis. When a person living with ALS requires treatment in a hospital setting, they face unique challenges. We have resources available to help our ALS Community create plans tailored around the needs of people living with ALS. Read more here.
My jaw muscles are almost completely atrophied. I can barely even touch my teeth together, let alone chew. I can only breathe through my nose, so the thought of a cold (let alone corona virus) is terrifying. -Kelly K., person living with ALS
quick links
- How You Can Help
- COVID-19 Vaccine Information
- Stories From the Field
- Support Group Information
- Walks to Defeat ALS
- About Us
- Contact Us
Helpful Resources
HOW YOU CAN HELP
In the best of times, we lean heavily on the support of our community to provide critical programs and services to people living with ALS. We are in urgent need of an additional commitment from our community so that we can continue to be here for those with ALS now, and when this crisis ends.
Please consider contributing to support our unparalleled care and support for those we serve. We are all facing new fears and uncertainties, but for those living with ALS, COVID-19 is simply too great of a threat to bear.
Read on to learn how your contribution, no matter how big or small, will make all the difference in helping us support the ALS community in these unprecedented times.
COVID-19 VACCINE INFORMATION
The ALS Association Greater New York Chapter continues to monitor the news around COVID-19 and vaccines. Our highest priority remains the safety and well-being of people with ALS, their families and caregivers, and our staff.
Three vaccines, Moderna COVID-19 and Pfizer-BioNTech COVID-19, and Johnson & Johnson Janssen's COVID-19 have been approved for emergency authorization.
- For specific information about symptoms you may be experiencing or questions about personal exposure as someone living with ALS or as a caregiver, please contact your physician directly.
- We anticipate that for the foreseeable future:
- The number of new COVID-19 cases and the DELTA variant will remain relatively high, so it is important to continue physical distancing, wearing masks, and other practices to lower the risk of infection for ourselves and our families.
- For New York State vaccine information click here. For New Jersey information click here. For more breaking news and additional resources you can visit The ALS Association COVID-19 Vaccine Information hub.
ALS IS UNRELENTING AND SO IS OUR RESOLVE
As a Chapter, we are collaborating and adapting to weather this crisis, together.
It is not business as usual, and our regular programs and services are no longer enough to help ALS families through this difficult and scary time.
Scroll to learn more about our targeted relief efforts to protect our community, adapt our programs, and meet the unique needs of people living with ALS and their families during the COVID-19 crisis.
ACCESS TO TELEMEDICINE
Those living with ALS still need access to multidisciplinary clinical care, despite the inherent risks of attending in-person doctor visits currently. The Chapter is working to educate and assist with technology in patient's homes that will give them access to virtual medical appointments with physicians and clinical care teams.
VIRTUAL PROGRAMS
In times of isolation and fear, protecting our community's mental health and building a supportive network is more important than ever. Support group meetings and care consultations with Chapter staff provide a sense of hope and connection that helps the ALS community weather daily battles.
These must continue uninterrupted and using technology and web-based platforms like Zoom, the Chapter will continue to facilitate "face time" between our staff, patients, and caregivers. In response, we have developed:
- Virtual Support Group meetings for patients and caregivers
- Individual care consultations for new patients
- Online training of virtual communication platforms
- Virtual appointments with Care Service Coordinators
Stories from the Field
We have encountered incredible stories of resilient people, continuing their fight against ALS while facing new realities and new fears in light of the COVID-19 pandemic. Forgoing "traditional" means of support, expanding virtual access, and getting creative to meet unique needs are the best ways for us to attack this crisis and its risk to our community. Here are some stories of how, as a community, we've overcome some interesting and unexpected obstacles and faced the crisis head on.
PREVENTING ISOLATION
Support Group Meetings connect our community to their peers and to us—these meetings help to galvanize the ALS community, while offering vital information, support and resources to those navigating life with ALS. Moving towards virtual support groups to protect the safety of those we serve was a logical step to ensure our community continues to receive this vital service.
"We'd definitely recommend joining the Virtual Support Group - it's a great way to stay connected with our ALS family, and gain tips from others on how to provide the best caregiving. Seeing everyone's smiling faces and sharing in each other's joys and frustrations during this uncertain time has been a huge comfort." - Diane and Bob McCracken, Lori Seaton
HELPING FAMILIES PREPARE FOR THE UNEXPECTED
Keeping people with ALS and their families safe and isolated in their own homes during the pandemic is the Chapter's #1 priority. In normal times, it costs approximately $250,000 annually to care for someone with ALS. We want to ensure that this crisis does not cause further financial harm to families living with ALS.
The Respite Care Grant Program is an important part of the Chapter's plan to protect those with ALS and their families in times of emergency and crisis. It provides financial assistance to help people living with ALS remain safe and independent in their own homes. The grants help to offset the costs associated with medical expenses and direct care support.
KEEPING LINES OF COMMUNICATION OPEN
Many people living with ALS will experience difficulty with speech at some point in their journey.
Ensuring that people with ALS have access to the right communication equipment and accessibility tools makes it possible for them remain connected to their families, friends, and physicians. This becomes particularly important during a pandemic such as COVID-19 when both pALS as well as their loved ones struggle to maintain communication with the world around them.
Over the past year, the Chapter has loaned 720 pieces of augmentative communication devices, while working closely with Speech Language Pathologists to find the right fit.
With COVID-19 upon us, we anticipate an increase in demand for additional communication devices, therefore our need for support will be greater in the coming months.
"Many thanks to you, Kayvan, Ben and Kyle for all you have done for us through the ALS Association. This is a very hard set of challenges for our family and for T—who is a champion still fighting every day. We appreciate how often everyone has been there for us.”
Support Group Information
For safety reasons, due to Covid 19, all in-person support groups will be telephone or online groups. All support group facilitators will be hosting a dial-in telephone support group option during your regularly scheduled group times. Additionally, our chapter offers a Virtual Support Group. Please contact Chris Dunn at (212) 720-3044 or your group facilitator(s) if you are interested in this option later this month. Please click here for all the details and options.
Our chapter remains committed to offering uninterrupted support to our community during this time. If you have any questions or would like to arrange an individual call with your support group leaders to discuss any concerns, please do not hesitate to reach out.
Walk to Defeat ALS
The ALS Association Greater New York Chapter is committed to the safety of the ALS community, our walkers, staff, and supporters throughout the COVID-19 pandemic. It is with this in mind that we made changes to our 2021 Walk program.
As we keep up with the changing landscape of 2021, our environment and to prioritize the health and safety of our community, we invite all Walkers to "Walk Your Way" whether that is in person at one of several locations or from home.
Please keep spreading the word and raising support. And don’t hesitate to reach out if we can be of any help! Contact your Walk representative or email walks@als-ny.org The most up-to-date information can always be found on www.alswalks.org
ABOUT US
The ALS Association's mission is to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.
As one of The ALS Association's leading chapters, the Greater New York Chapter plays a major role in promoting the mission of The ALS Association by:
- Providing quality services to patients and families living with ALS throughout the greater New York area, including New York City, Long Island, Westchester County, the Hudson Valley, and northern and central New Jersey.
- Funding aggressive, cutting-edge research to find a cure that utilizes the newest techniques and fosters collaborative initiatives among government agencies, the private sector and scientists.
- Supporting The ALS Association's national advocacy program to expand government support of research and elicit programs to make treatments and care accessible and affordable for all ALS patients.
- Heightening awareness of ALS in order to stimulate volunteerism, scientific and healthcare community activism, and public support that is essential to the fight against ALS.
CONTACT US
The ALS Association Greater New York Chapter, 42 Broadway , Suite 1724, New York, NY 10004 Phone: (212) 619-1400 Fax: (212) 619-7409 als@als-ny.org
In accordance with the CDC, and to ensure the safety of the ALS community our office is open Tuesday, Wednesday, and Thursday. In the interim, our team has mobilized and is working remotely to ensure our programs continue to serve the ALS community in this time of crisis.
Credits:
Created with images by Fusion Medical Animation - "New visualisation of the Covid-19 virus" • Hello I'm Nik 🎞 - "Letter from the Prime Minister | Stay At Home" • Allie Smith - "Zoom app on iPhone and laptop"