ALS Support Services in the United States
ALS clinics across the United States 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.
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.
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.
I AM ALS is a patient-led organization that raises awareness, funds research, provides resources, and creates opportunities for patients to lead the fight against ALS. I AM ALS Navigator is a free service that connects you over the phone or online with a person who can answer your logistical questions, connect you to resources, and provide emotional support.
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.
Team Gleason helps provide cutting-edge technology, equipment, services, and travel experiences to people with neuromuscular diseases or injuries. It was founded by former New Orleans Saints player, Steve Gleason, who was diagnosed with ALS in 2011.
The LiveLikeLou Foundation raises money for ALS research, supports Hope Loves Company summer camps, and provides partial college scholarships for dependents of people living with ALS.
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.
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.
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.
I AM ALS is a patient-led organization that raises awareness, funds research, provides resources, and creates opportunities for patients to lead the fight against ALS. I AM ALS Navigator is a free service that connects you over the phone or online with a person who can answer your logistical questions, connect you to resources, and provide emotional support.
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.
Team Gleason helps provide cutting-edge technology, equipment, services, and travel experiences to people with neuromuscular diseases or injuries. It was founded by former New Orleans Saints player, Steve Gleason, who was diagnosed with ALS in 2011.
The LiveLikeLou Foundation raises money for ALS research, supports Hope Loves Company summer camps, and provides partial college scholarships for dependents of people living with ALS.
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.
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
The Adaptive Technology Center at the Steve Gleason Institute for Neuroscience at Washington State University serves as an information, education, and exploration center on adaptive technologies for families affected by neurodegenerative diseases. Families can schedule in-person or virtual tours to learn about power wheelchairs, communication devices, home automation options, and other technologies that promote independence and an improved quality of life.
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 living 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 living 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 living 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 Joan Dancy and PALS Foundation provides support to families in central New Jersey (Monmouth, Ocean, and Middlesex counties) that have been impacted by ALS. It aims to provide a better quality of life by providing ongoing assistance and support, hosting monthly support groups and caregiver meetings, loaning durable medical equipment, and more.
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.
The Susan Mast ALS Foundation provides support for ALS patients, families, and caregivers living in West Michigan. The nonprofit organization loans equipment, hosts support groups, offers respite care for caregivers, conducts home visits, helps with home modifications, provides speech support, and more.
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 living 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 living 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 living 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 Joan Dancy and PALS Foundation provides support to families in central New Jersey (Monmouth, Ocean, and Middlesex counties) that have been impacted by ALS. It aims to provide a better quality of life by providing ongoing assistance and support, hosting monthly support groups and caregiver meetings, loaning durable medical equipment, and more.
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.
The Susan Mast ALS Foundation provides support for ALS patients, families, and caregivers living in West Michigan. The nonprofit organization loans equipment, hosts support groups, offers respite care for caregivers, conducts home visits, helps with home modifications, provides speech support, and more.
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.
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.
Support for Children and Youth
The ALS Association has a graphic novel for children, a book for teens, a guide for parents about talking with and supporting children, and a guide for educators working with children impacted by ALS. You can download or order these youth education books and guides.
The ALS Society of Canada has thoughtful guides for parents, children, teens, and educators, all with the goal of helping young people cope when a family member is diagnosed with ALS. You can download these printable PDF booklets.
Hope Loves Company is a nonprofit organization based in New Jersey that provides educational and emotional support to children and young adults who have or had a loved one with ALS. Every year, HLC hosts three-day camps in six states at no cost to the camper. Learn more.
Inheritance of Hope (IoH) is a national charity with the mission of inspiring hope in young families facing the loss of a parent. IoH serves these children and their families with resources and relationships for the challenges they face. Through online, on-site, and on-going offerings, families faced with an ALS diagnosis can find community and support with others who “get it.”
I AM ALS has compiled a list of partial college scholarships for young people whose families have been affected by ALS.
The ALS Society of Canada has thoughtful guides for parents, children, teens, and educators, all with the goal of helping young people cope when a family member is diagnosed with ALS. You can download these printable PDF booklets.
Hope Loves Company is a nonprofit organization based in New Jersey that provides educational and emotional support to children and young adults who have or had a loved one with ALS. Every year, HLC hosts three-day camps in six states at no cost to the camper. Learn more.
Inheritance of Hope (IoH) is a national charity with the mission of inspiring hope in young families facing the loss of a parent. IoH serves these children and their families with resources and relationships for the challenges they face. Through online, on-site, and on-going offerings, families faced with an ALS diagnosis can find community and support with others who “get it.”
I AM ALS has compiled a list of partial college scholarships for young people whose families have been affected by ALS.
Research and Treatment
NEALS is an academic research consortium, contracted research organization, and resource tool for the ALS community that hosts educational webinars, an annual Clinical Research Learning Institute, and more.
The ALS Therapy Development Institute is the world’s first and largest nonprofit biotech focused 100% on ALS research. It provides up-to-date information on current research. Augie’s Quest was founded by fitness industry mogul, Augie Nieto, who was diagnosed in 2005. Augie’s Quest directly funds the ALS Therapy Development Institute.
The National ALS Registry is a database that collects information from volunteers living with ALS to help scientists work toward a cure. The Registry has been funded by Congress since 2008 and is operated by the Centers for Disease Control (CDC).
ClinicalTrials.gov is a government website that helps you locate privately and publicly funded ALS clinical trials.
ALSUntangled is a trustworthy website that can help you make sense of alternative/off-label ALS treatment options, such as supplements, that you may find advertised online. ALSUntangled has dozens of completed reviews with letter grades that can help you make more informed decisions.
Project ALS identifies and funds promising research that could lead to effective treatments and a cure for ALS. It encourages researchers from multiple disciplines to share data and collaborate.
Patients Like Me is a health information-sharing website for patients living with different conditions, including ALS. On the website, patients can share their real-world experiences, ask questions, and connect with and learn from others who have the same condition. All of this shared information is used by researchers as data to develop more effective treatments.
The ALS Therapy Development Institute is the world’s first and largest nonprofit biotech focused 100% on ALS research. It provides up-to-date information on current research. Augie’s Quest was founded by fitness industry mogul, Augie Nieto, who was diagnosed in 2005. Augie’s Quest directly funds the ALS Therapy Development Institute.
The National ALS Registry is a database that collects information from volunteers living with ALS to help scientists work toward a cure. The Registry has been funded by Congress since 2008 and is operated by the Centers for Disease Control (CDC).
ClinicalTrials.gov is a government website that helps you locate privately and publicly funded ALS clinical trials.
ALSUntangled is a trustworthy website that can help you make sense of alternative/off-label ALS treatment options, such as supplements, that you may find advertised online. ALSUntangled has dozens of completed reviews with letter grades that can help you make more informed decisions.
Project ALS identifies and funds promising research that could lead to effective treatments and a cure for ALS. It encourages researchers from multiple disciplines to share data and collaborate.
Patients Like Me is a health information-sharing website for patients living with different conditions, including ALS. On the website, patients can share their real-world experiences, ask questions, and connect with and learn from others who have the same condition. All of this shared information is used by researchers as data to develop more effective treatments.
Health Care, Benefits, and Insurance
Social Security Disability Benefits (SSDI) explains disability benefits and how to apply.
Medicare is the government health-care program for seniors and disabled people. Most people living with ALS qualify for Medicare, regardless of age.
The ALS Medicare Resource Line provides free individualized case management assistance for people living with ALS, their family members, and caregivers. Medicare experts can help you navigate eligibility and enrollment over the phone.
Medicaid is the national health insurance program primarily for low-income families and individuals that provides free or low-cost coverage.
Long-term Care through Medicaid offers state-run programs that can help pay for long-term, non-medical care for some individuals. Eligibility guidelines are different than Medicaid’s health insurance program.
HealthCare.gov is the website for the Affordable Care Act that helps you search for and compare private health insurance plans in your area.
COBRA is the federal program that allows you (and your family) to remain on your same insurance plan for up to 18 months after employment ends.
FMLA (Family and Medical Leave Act) is the federal policy that provides certain employees with up to 12 weeks of unpaid, job-protected leave per year.
Medicare Rights Center is a nonprofit customer service organization dedicated to helping seniors and people with disabilities navigate the Medicare system.
A.C.C.E.S.S. Program is a free service for people living with ALS and other chronic conditions that can help you navigate Medicare and other social and economic challenges.
Medicare is the government health-care program for seniors and disabled people. Most people living with ALS qualify for Medicare, regardless of age.
The ALS Medicare Resource Line provides free individualized case management assistance for people living with ALS, their family members, and caregivers. Medicare experts can help you navigate eligibility and enrollment over the phone.
Medicaid is the national health insurance program primarily for low-income families and individuals that provides free or low-cost coverage.
Long-term Care through Medicaid offers state-run programs that can help pay for long-term, non-medical care for some individuals. Eligibility guidelines are different than Medicaid’s health insurance program.
HealthCare.gov is the website for the Affordable Care Act that helps you search for and compare private health insurance plans in your area.
COBRA is the federal program that allows you (and your family) to remain on your same insurance plan for up to 18 months after employment ends.
FMLA (Family and Medical Leave Act) is the federal policy that provides certain employees with up to 12 weeks of unpaid, job-protected leave per year.
Medicare Rights Center is a nonprofit customer service organization dedicated to helping seniors and people with disabilities navigate the Medicare system.
A.C.C.E.S.S. Program is a free service for people living with ALS and other chronic conditions that can help you navigate Medicare and other social and economic challenges.
Online Support and Coordination Tools
Roon is a new app and web platform where you can find short videos from leading experts that answer common questions about ALS.
Care Connection is an ALS Association program that can help you launch, organize, and mobilize your community of support.
Lotsa Helping Hands is an online care calendar that helps you coordinate support and arrange help from others.
CaringBridge is a popular website that helps you create your own website to connect with, rally, and coordinate support from your community.
Meal Train is a website that coordinates meal deliveries from your family, friends, and community.
Caring Info is a website from the National Hospice and Palliative Care Organization that provides general information and suggestions for caregivers.
Facebook has a number of active ALS caregiver groups that can provide support, answer questions, and connect you with others who better understand what you are experiencing. Search for “ALS caregiver” groups.
ALS Forums is an online, volunteer-moderated forum and support group for people affected by ALS.
Care Connection is an ALS Association program that can help you launch, organize, and mobilize your community of support.
Lotsa Helping Hands is an online care calendar that helps you coordinate support and arrange help from others.
CaringBridge is a popular website that helps you create your own website to connect with, rally, and coordinate support from your community.
Meal Train is a website that coordinates meal deliveries from your family, friends, and community.
Caring Info is a website from the National Hospice and Palliative Care Organization that provides general information and suggestions for caregivers.
Facebook has a number of active ALS caregiver groups that can provide support, answer questions, and connect you with others who better understand what you are experiencing. Search for “ALS caregiver” groups.
ALS Forums is an online, volunteer-moderated forum and support group for people affected by ALS.
For More Information
ALS News Today is a news and information website that posts daily about the latest ALS science and research news.
The National Institutes of Health (NIH) website has trusted facts about ALS from the nation’s medical research agency.
Living with ALS Resource Guides is a set of 11 comprehensive guides developed by The ALS Association that you can read, download, and print at no cost.
The National Institutes of Health (NIH) website has trusted facts about ALS from the nation’s medical research agency.
Living with ALS Resource Guides is a set of 11 comprehensive guides developed by The ALS Association that you can read, download, and print at no cost.
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