Curated by Bill Kerner, a Caregiver with Lived Experience
This guide provides information on organizations, foundations, and resources that offer assistance to individuals and families affected by ALS (Amyotrophic Lateral Sclerosis). Some programs have been personally used and recommended, while others are included for broader awareness.
Assistive Technology
Meet Obi
Robotic feeding device
Obi is a robotic arm designed to help individuals with limited hand or arm mobility eat independently by using button controls. While I was unable to secure one in time for my wife, others in the ALS community have used and appreciated it.
Foundations Offering Grants, Equipment, and Services
Through on-site and online programs, Inheritance of Hope provides community with others in similar situations and loving volunteers, so families don’t feel alone but know others “get it” and care.
Offers grants and has a van program. While I did not personally use their van assistance, they have helped others with meaningful support.
Provides financial assistance and grants. They have personally helped our family.
Supports home modifications and renovations for ALS families. Although I haven’t used their services, they are known for helping others with accessibility upgrades.
- Offers a loan closet, ramp program, and a $1,500 annual Quality of Life grant.
- Some programs may not be prominently listed, so it’s worth contacting your local chapter directly.
Focused on Maryland residents with ALS, offering grants and support for home care and medical needs.
- Offers loan closets, family vacations, and other support services.
- Based in Louisiana, with enhanced local services including a vent facility.
Grants vacations to mothers diagnosed with terminal illnesses and their families.
Specializes in communication support, including:
- Voice banking assistance
- Help securing insurance coverage or grants
- Creating AI-synthesized voices
CCALS – Compassionate Care ALS
Based in Boston, but provides national support including grants and support groups.
Founded in honor of the ALS Ice Bucket Challenge creator, this foundation offers grant assistance to ALS families.
Supports families in Virginia, North Carolina, and South Carolina. While previously national, they’ve narrowed their focus due to demand.
Offers financial assistance to people living with ALS.
Provides grant funding and advocacy services for ALS patients.
Supports individuals with various diseases, including ALS, by paying copays directly to pharmacies for disease-specific medications.
Educational & Informational Resources
Community-led advocacy and resource center focused on awareness, policy change, and support.
Offers clear and practical information for navigating life with ALS, including care strategies, legal planning, and emotional support.
Medical Supplies & Daily Living Aids
Highly recommended for daily medical supplies, incontinence products, and caregiving essentials—often more affordable than Amazon.
Recommended Product
A high-quality cushion, ideal for individuals who remain seated for extended periods or are unable to stand. Offers comfort and pressure relief.
Many of these organizations offer invaluable services, but some programs are not well advertised. It’s worth reaching out directly, asking questions, and advocating for what your family needs. If you know someone with ALS or are walking this path yourself, I hope this guide brings a little more clarity and support.
— Compiled with love, from one ALS caregiver to another
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