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ALS United Greater New York

ALS United Greater New York is a regional nonprofit serving people living with ALS and their families in New York City, Long Island, the Lower and Mid-Hudson Valley, and Northern and Central New Jersey.1

General contact: 212-619-1400, [email protected], als-ny.org

When contacting the organization, provide the person's state, county or borough, ZIP code, and the one barrier that needs attention first. The organization can confirm whether the address is within its current service area and route the request to Care Services.

What it can help route

ALS United describes its community care services as free to families affected by ALS. Its public service menu includes professional care coordination, support groups, caregiver support, education, home assessments, equipment and assistive technology, multidisciplinary clinic collaboration, limited grants, and limited clinic transportation.2

If the problem is… Ask about…
A new diagnosis or no clear coordinator A Care Service Coordinator and the appropriate regional clinic route
Mobility, bathing, transfers, communication, or environmental control Clinical assessment plus an equipment or assistive-technology loan
The home no longer works for care A home assessment and options to explore
One caregiver is carrying the full load Caregiver groups, respite planning, training, or current assistance programs
Getting to an ALS clinic Current transportation availability and appointment requirements

The equipment program offers short- and extended-term loans of recommended durable medical equipment and assistive technology at no charge. It may bridge an insurance delay or provide a useful item that insurance does not cover.3 Many requests need a healthcare professional to help select an appropriate item.

Caregiver support includes groups, peer connection, respite orientation, and limited assistance routes. Because ALS care may involve transfers, communication systems, or other complex routines, explain what a replacement caregiver would need to know and do safely.4

ALS United also works with multidisciplinary ALS clinics across the region and maintains a live clinic page. Limited transportation may be available for some clinic appointments.5

Why caregiver-specific support matters

ALS caregivers may manage activities of daily living, the household, the care plan, insurance, and durable medical equipment. Some report more than 100 hours of care per week, and documented gaps include psychological support, training, and respite.6 Name those caregiver constraints directly when speaking with Care Services; they are part of whether a home plan can work.

Authority and service boundaries

ALS United Greater New York is a strong authority for its own territory, contacts, programs, and intake routes. It is not the authority for medical treatment, Social Security or Medicare eligibility, state Medicaid decisions, insurance approval, or emergency response.

Confirm directly:

  • whether the address is in the current catchment
  • whether a program is currently available and funded
  • equipment inventory, assessment, fit, delivery, training, and return terms
  • grant or transportation eligibility and timing
  • clinic referral and appointment requirements

Do not assume that a service listing guarantees an opening, item, payment, or approval.

Immediate danger

If the person cannot breathe, is choking, is unresponsive, or is in immediate danger, call 911. ALS United is not an emergency-response service.

This Wiki entry is an independent public-resource summary. It does not imply a partnership, referral agreement, or endorsement by ALS United Greater New York.

See ALS Support in Greater New York for New York and New Jersey state routes, federal benefits orientation, and a problem-to-resource map.

  1. ALS United Greater New York. Official homepage and service territory. Source → ↩

  2. ALS United Greater New York. “Our Care Services.” Source → ↩

  3. ALS United Greater New York. “Equipment Loan Program.” Source → ↩

  4. ALS United Greater New York. “Support for Caregivers.” Source → ↩

  5. ALS United Greater New York. “ALS Clinics and Centers.” Source → ↩

  6. National Academies of Sciences, Engineering, and Medicine. “Living with ALS: Supporting Caregivers.” Source → ↩