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The ALS community is strong. Caring professionals, organizations, and individuals can help guide you and your family. You do not have to figure everything out on your own.
Reach out and ask questions. Everything is voluntary and most services are free. |
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ALS Support Services in the United States
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ALS clinics have teams of multidisciplinary professionals who support and guide ALS patients throughout the progression of the disease. ALS clinics may be stand-alone clinics, or they may be housed within the neurology departments of public or private hospitals, universities, or the VA.
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The ALS Association funds research and advocates for public policy changes on a national level. On a local level, chapters across the country provide emotional and logistical support, coordinate support groups, loan equipment, sponsor clinics, and much more.
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The Muscular Dystrophy Association (MDA) provides support services for families affected by muscular dystrophy, ALS, and related diseases. MDA has ALS Care Centers, ALS-specific support groups, educational materials, and more.
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The I AM ALS Navigation Program provides ongoing emotional support and logistical guidance for families affected by ALS. You can also be paired with a mentor through the Peer Support initiative. Learn more.
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Synapticure is a telemedicine healthcare company that provides personalized and supportive care for people living with ALS via video, phone and email. Synapticure's team of care coordinators, genetic counselors, and neurologists can help you navigate the complexity of your medical care.
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Everything ALS is a patient-focused nonprofit organization that hosts virtual bi-monthly ALS Experts Talk events and uses technological innovations and data science to develop digital biomarkers by offering an open-data platform for direct engagement with patients, caregivers, researchers, and drug companies.
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Support for Children and Young Adults Affected by ALS
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Hope Loves Company (HLC) is the only nonprofit in the U.S. dedicated to providing educational and emotional support to children and young adults affected by ALS. HLC hosts in-person camps and awards $1,000 scholarships for continued education. All programs are provided at no cost to families.
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Regional ALS Organizations in the US
ALS in the Heartland is an organization that provides support to families in Nebraska and western Iowa that have been affected by ALS. Founded in 2006, ALS in the Heartland provides a respite care grant program, an equipment loan program, and a team of volunteers who can help with chores, errands, and yard work. People with ALS are paired with a social worker who can offer emotional support, answer questions, advocate on their behalf, and connect them to local resources.
ALS Hope Foundation is a nonprofit organization that serves families impacted by ALS in Pennsylvania, New Jersey, Delaware, Maryland, and New York. In addition to providing multidisciplinary care at its MDA/ALS Center of Hope at Temple University, ALS Hope Foundation hosts support groups, provides funding for research and education, and collaborates with national and international ALS organizations.
ALS of Michigan is a nonprofit organization that has supported people with ALS and their families in the state of Michigan since 1978. ALS of Michigan offers home visits, equipment loans, support groups, respite care, counseling, education, workshops, and more. It also has a dedicated Augmentative and Alternative Communication Center.
Compassionate Care ALS (CCALS) is a Massachusetts-based nonprofit organization that supports people with ALS, their families, health professionals, and communities. CCALS loans equipment and wheelchair-accessible vans, provides assistance with Medicare and Medicaid, coordinates in-home medical services, offers emotional support, hosts workshops, and has a retreat center.
The Joe Martin ALS Foundation is a North Carolina-based organization that provides many support services at no cost, including caregiver training, 3-6 hours of in-home care per week, home assessments, wheelchair-accessible transportation to appointments and events, support groups and workshops, a camp for children whose lives have been affected by ALS, and a network of volunteers who can help families with meals, errands, and home projects.
The Les Turner ALS Foundation is an independent organization that provides a local community of support for families affected by ALS in the Chicago area. Founded in 1977, the Les Turner ALS Foundation conducts research, operates an ALS clinic, and provides extensive support services, including individualized care, support groups, equipment loans, education, events, and grants.
MAC Angels is a nonprofit organization that provides support services to families affected by ALS in New York, New Jersey, and Connecticut. MAC Angels offers home visits, loaner equipment, transportation to clinic visits, support groups, emotional support, and help navigating the healthcare system.
Matt's Place Foundation is a nonprofit organization that provides hope, housing, and assistance to people and families affected by ALS who live in Idaho, Montana, and Washington State. Families can apply for mortgage/rent assistance, remodeling assistance, ramp assistance, and the opportunity to live rent-free in one of two smart homes (Coeur d’Alene, Idaho or Spokane, Washington) that were designed specifically for people living with ALS.
ALS Hope Foundation is a nonprofit organization that serves families impacted by ALS in Pennsylvania, New Jersey, Delaware, Maryland, and New York. In addition to providing multidisciplinary care at its MDA/ALS Center of Hope at Temple University, ALS Hope Foundation hosts support groups, provides funding for research and education, and collaborates with national and international ALS organizations.
ALS of Michigan is a nonprofit organization that has supported people with ALS and their families in the state of Michigan since 1978. ALS of Michigan offers home visits, equipment loans, support groups, respite care, counseling, education, workshops, and more. It also has a dedicated Augmentative and Alternative Communication Center.
Compassionate Care ALS (CCALS) is a Massachusetts-based nonprofit organization that supports people with ALS, their families, health professionals, and communities. CCALS loans equipment and wheelchair-accessible vans, provides assistance with Medicare and Medicaid, coordinates in-home medical services, offers emotional support, hosts workshops, and has a retreat center.
The Joe Martin ALS Foundation is a North Carolina-based organization that provides many support services at no cost, including caregiver training, 3-6 hours of in-home care per week, home assessments, wheelchair-accessible transportation to appointments and events, support groups and workshops, a camp for children whose lives have been affected by ALS, and a network of volunteers who can help families with meals, errands, and home projects.
The Les Turner ALS Foundation is an independent organization that provides a local community of support for families affected by ALS in the Chicago area. Founded in 1977, the Les Turner ALS Foundation conducts research, operates an ALS clinic, and provides extensive support services, including individualized care, support groups, equipment loans, education, events, and grants.
MAC Angels is a nonprofit organization that provides support services to families affected by ALS in New York, New Jersey, and Connecticut. MAC Angels offers home visits, loaner equipment, transportation to clinic visits, support groups, emotional support, and help navigating the healthcare system.
Matt's Place Foundation is a nonprofit organization that provides hope, housing, and assistance to people and families affected by ALS who live in Idaho, Montana, and Washington State. Families can apply for mortgage/rent assistance, remodeling assistance, ramp assistance, and the opportunity to live rent-free in one of two smart homes (Coeur d’Alene, Idaho or Spokane, Washington) that were designed specifically for people living with ALS.
ALS/MND Organizations Around the World
Note: Some countries use the term Motor Neuron Disease (MND) instead of ALS to refer to all forms of the disease.
The ALS Society of Canada is Canada’s leading ALS support organization. Its website includes a manual for people living with ALS and booklets for helping children and teens cope.
The International Alliance is a global network of ALS/MND associations informed by PALS/CALS that builds capability for its members and connects to external stakeholders. They help members thrive by adding value to existing and future associations through curation and creation of information and by acting as a global gateway through which Alliance Members, PALS and CALS, and internal and external stakeholders connect. Visit their website to search for an ALS/MND organization near you, find educational webinars and resources, and learn about their annual events, including the Allied Professionals Forum.
The Motor Neurone Disease Association (MNDA) focuses on improving access to care, research and campaigning for people living with or affected by MND in England, Wales, and Northern Ireland.
The International Alliance is a global network of ALS/MND associations informed by PALS/CALS that builds capability for its members and connects to external stakeholders. They help members thrive by adding value to existing and future associations through curation and creation of information and by acting as a global gateway through which Alliance Members, PALS and CALS, and internal and external stakeholders connect. Visit their website to search for an ALS/MND organization near you, find educational webinars and resources, and learn about their annual events, including the Allied Professionals Forum.
The Motor Neurone Disease Association (MNDA) focuses on improving access to care, research and campaigning for people living with or affected by MND in England, Wales, and Northern Ireland.
Veterans Organizations
The U.S. Department of Veterans Affairs provides extensive service-connected benefits for military veterans with ALS.
The Paralyzed Veterans of America is a veterans services organization with local chapters around the country that can explain your benefits, guide you through the application process, submit your paperwork, and be your liaison to the VA.
The American Legion is a veterans service not-for-profit organization that can help veterans and families understand and apply for benefits.
See our full Resource List for more helpful organizations, websites, and services.
The Paralyzed Veterans of America is a veterans services organization with local chapters around the country that can explain your benefits, guide you through the application process, submit your paperwork, and be your liaison to the VA.
The American Legion is a veterans service not-for-profit organization that can help veterans and families understand and apply for benefits.
See our full Resource List for more helpful organizations, websites, and services.
