Below you will find local and national resources that can help support people living with ALS and their families.
Local ALS Support Services in Illinois
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 Chicago
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ALS United Greater Chicago is committed to delivering exceptional care services, the latest resources, and premier programming at no cost to individuals living with ALS, their families, and caregivers.
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Free services include:
- Home visits that provide home safety assessments, disease education, and guidance on equipment use
- Adaptive equipment lending program
- Virtual support groups for individuals affected by ALS, caregivers, family, and friends
- Educational programming that covers a wide range of ALS topics
- Training program for non-professional caregivers, such as family and friends
- Respite care program that can provide a break for primary caregivers
- Online counseling program
- Bereavement support program for those who have lost a loved one to ALS
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Service Area: 46 counties in the Greater Chicago area + Northern and Central Illinois
Website: www.alsunitedchicago.org Phone: (312) 932-0000 Email: [email protected] |
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Les Turner ALS Foundation
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Founded in 1977, the Les Turner ALS Foundation is one of the longest-serving ALS groups in the country. It conducts research, operates a multidisciplinary ALS clinic, and provides extensive support services to help improve quality of life for people living with ALS.
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Free services include:
Service Area: Greater Chicago area
Website: www.lesturnerals.org
Phone: (847) 679-3311
Email: [email protected]
- A dedicated support services team that can answer your questions, provide emotional support, and connect you with resources
- Coordination and collaboration with the ALS clinic at Northwestern Medicine
- Caregiver support
- Support groups for people living with ALS, caregivers, and those who have lost a loved one
- Online educational guides, webinars, and decision tools
- Guidance on clinical trials, treatment, and research
- Guidance on Social Security Disability Insurance, Medicare, and Medicaid
- Assistance with advance directives, hospice and palliative care, and end-of-life planning
- Financial assistance for some equipment and home modifications
- Grants for short-term respite care
- Transportation assistance to and from ALS clinic visits
- Referrals to need-based financial grant programs
Service Area: Greater Chicago area
Website: www.lesturnerals.org
Phone: (847) 679-3311
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.
Service Area: Central and southern Illinois Visit Website Phone: (402) 819-6180 Email: [email protected] |
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National ALS Support and Services
The following organizations can provide support, material assistance, advocacy opportunities, and more for families affected by ALS.
- The ALS Association offers Medicare and insurance navigation services, a Virtual Home Modification and Safety Assessment program, online educational resources, and more.
- Compassionate Care ALS (CCALS) offers an innovative and holistic range of in-person and virtual services that are tailored to meet each family’s unique needs.
- 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.
