Below you will find local and national resources that can help support people living with ALS and their families.
Local ALS Support Services in New York
We highly recommend connecting with an ALS nonprofit organization that serves your area. These organizations can answer your questions, provide individualized support, connect you to resources, and much more—free of charge.
ALS United Greater New York
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ALS United Greater New York provides on-the-ground comprehensive care and support to individuals and families affected by ALS in and near New York City.
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Free services include:
Service Area: New York City, Long Island, Westchester County, Hudson Valley, and Northern and Central New Jersey
Website: www.als-ny.org
Phone: (212) 619-1400
Email: [email protected]
- Care management
- Home visits
- Equipment loan program
- Accessibility guidance and support
- ALS clinic coordination
- Transportation to and from clinic appointments
- Virtual support groups
- Educational webinars
- Caregiver support
- Financial grants
- Bereavement support
Service Area: New York City, Long Island, Westchester County, Hudson Valley, and Northern and Central New Jersey
Website: www.als-ny.org
Phone: (212) 619-1400
Email: [email protected]
The ALS Association
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The ALS Association offers a variety of programs and services that help support people living with ALS and their families. The ALS Association provides advocacy leadership, research and clinical trial information, ALS clinic referrals, support groups, Medicare/Insurance Navigation services, a Virtual Home Modification and Safety Assessment program, and My ALS Journey, an interactive, web-based tool that allows people living with ALS to take control of their journey with the disease. Visit their website or call to learn more about services in your area.
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Compassionate Care ALS, Inc. (CCALS)
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Since 1998, CCALS has offered an innovative and holistic range of services that are tailored to meet each family’s unique needs. CCALS’ expertise, support, and state-of-the-art equipment can transform the daily lives of individuals, caregivers, and families living with ALS.
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Free services include:
Service Area: CCALS is based in Massachusetts and also provides support services in New Hampshire, New York, New Jersey, Connecticut, Florida, California, and Colorado.
Website: www.ccals.org
Phone: (508) 444-6775
Email: [email protected]
- Zoom and home visits
- Educational gatherings
- Speaker series
- Cultivating compassion education series
- Augmentative communication support
- Medicare assistance
- Support and guidance with end-of-life issues
- Heald Center Education, Retreat, and Respite
- Transportation to clinical trials and medical appointments (Massachusetts only)
- Durable medical equipment
Service Area: CCALS is based in Massachusetts and also provides support services in New Hampshire, New York, New Jersey, Connecticut, Florida, California, and Colorado.
Website: www.ccals.org
Phone: (508) 444-6775
Email: [email protected]
MAC Angels Foundation
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MAC Angels Foundation enhances quality of life for ALS patients, family members, and caregivers by providing the compassion, education, and unique resources needed to manage the devastating effects of this disease.
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Free services include:
Service Area: New York City, Long Island, Westchester/Hudson Valley, NY; Fairfield County, CT; Northern & Central New Jersey
Website: www.macangels.org
Phone: (914) 637-7010
Email: [email protected]
- Ongoing practical guidance and emotional support
- Home visits
- Informed dialogue on the impact of disease progression
- Consultation with a licensed social worker and/or nurse to help families navigate the healthcare system
- Assistance creating personal and professional support systems
- Virtual or in-person advocacy with healthcare providers
- Assistance securing durable medical equipment
- Bi-weekly caregiver support group
- Education on and assistance with completing advance healthcare directives
Service Area: New York City, Long Island, Westchester/Hudson Valley, NY; Fairfield County, CT; Northern & Central New Jersey
Website: www.macangels.org
Phone: (914) 637-7010
Email: [email protected]
ALS Ride for Life
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Serves the ALS community by raising research funds to help find a cure for amyotrophic lateral sclerosis (ALS), providing services to people with ALS and their families, and raising public awareness of the disease
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Free services and programs include:
Service Area: Based in Long Island, but most programs are nationwide
Website: www.alsrideforlife.org
Phone: (631) 444-1292
Email: [email protected]
- Respite care grants
- Wheelchair-accessible van program (temporary exclusive use of wheelchair accessible vans in Long Island and surrounding area only)
- Wheelchair accessible van short-term rental assistance program
- Legal fees assistance grant
- Virtual caregiver support group
- Individual/family emotional support
- End-of-life preparation and support
- Partial college scholarship program
Service Area: Based in Long Island, but most programs are nationwide
Website: www.alsrideforlife.org
Phone: (631) 444-1292
Email: [email protected]
National ALS Support and Services
The following organizations can provide support, material assistance, advocacy opportunities, and more for families affected by ALS.
- Hope Loves Company (HLC) provides support to children and young adults affected by ALS, including in-person camps in various states across the country.
- I AM ALS offers advocacy opportunities, virtual support groups, and ongoing emotional support and logistical guidance for families impacted by ALS.
- The LiveLikeLou Foundation has volunteers throughout the U.S. and Canada who can help families affected by ALS with tasks in and around the home.
- Synapticure is a telemedicine healthcare company that provides personalized care and guidance for people living with ALS via video, phone, and email.
- Team Gleason offers grants that help pay for innovative technology and equipment for people living with ALS.
Veterans Benefits
If you are a U.S. military Veteran who has been diagnosed with ALS, you should qualify for substantial service-connected benefits through the VA. The Paralyzed Veterans of America (PVA) is a nonprofit organization that can help Veterans and their families understand and apply for benefits.
Additional Resources
Our full resource list also includes information for international ALS/MND organizations, research and treatment, children and youth support, health care and Insurance, and online resources.
