We’re here to equip you with the knowledge and resources needed to navigate an ALS diagnosis and approach life with this disease.
Understanding ALS
Amyotrophic Lateral Sclerosis, or ALS, affects the motor neurons that control muscle movement. It can change how a person walks, talks, swallows, and breathes, while many people’s minds remain sharp throughout.
No two people experience ALS the same way. Some people first notice weakness in an arm or leg, while others notice changes in speech or swallowing. The disease also progresses differently from person to person. While life expectancy with ALS is generally two to five years after diagnosis, there is wide variation. ALS is a progressive and fatal disease.
There isn’t a single test that confirms ALS. Instead, doctors use a physical exam, medical history, and a series of tests to rule out other conditions. Because of this process, a diagnosis can take months or sometimes longer.
What is ALS?
ALS (amyotrophic lateral sclerosis) is a progressive neurodegenerative disease that affects motor neurons, the nerve cells responsible for muscle movement. Over time, these motor neurons stop working, leading to muscle weakness, loss of mobility, and eventually the inability to speak, eat, or breathe independently.
What’s the difference between Sporadic and familial ALS?
About 90 percent of ALS cases are sporadic, occurring without a known family history of the disease. The remaining cases are familial, meaning a gene mutation linked to ALS was inherited.
Researchers have identified several genes associated with ALS, including C9Orf72, which accounts for a notable share of familial cases. A family history doesn’t always mean the specific gene involved has been identified.
If you’re considering genetic testing, a genetic counselor can help you understand what a result could mean for you and your family.
There is currently no cure for ALS, but three treatments have been approved by the FDA. These treatments may help slow disease progression, but their benefits vary, and some are intended only for people with specific forms of ALS.
Riluzole was the first FDA-approved treatment for ALS, approved in 1995. It has been shown to modestly extend survival for people living with ALS.
Radicava (Edaravone) was approved by the FDA in 2017 and is available as an intravenous (IV) infusion or an oral suspension. It has been shown to slow the decline in physical function in some people with ALS.
Tofersen (Qalsody) was approved by the FDA in 2023 as the first treatment specifically for people with ALS caused by mutations in the SOD1 gene. It targets the underlying genetic cause of the disease by reducing the production of the SOD1 protein.
Support and care
Medication is only one part of ALS care. Because ALS can affect movement, breathing, communication, swallowing, and nutrition, people living with the disease may rely on different types of care, equipment, and technology as their needs change.
Mobility and daily activities
As strength and mobility change, people with ALS may use canes, walkers, wheelchairs, braces, and other assistive devices to support mobility and daily activities.
Respiratory support
Respiratory support may include devices that assist with breathing and coughing as these muscle groups weaken.
Communication support
Communication support may range from speech-generating devices to other assistive technologies that help people continue communicating as speech changes.
Nutrition and swallowing
Changes in swallowing and nutrition may be addressed through dietary modifications, nutritional support, and feeding tubes as needed.
Home and medical equipment
Durable medical equipment such as Hoyer lifts, hospital beds, and bathroom safety equipment, along with home modifications, can help make daily activities safer and more accessible as mobility needs change.
Building a worldwide network of experts
We encourage networking and communication between scientists in academia and the pharmaceutical and biotech industries, among other stakeholders.
Where to start with navigating ALS
There’s a lot to navigate after an ALS diagnosis. These five steps can help you get started.
After an ALS diagnosis, connecting with an ALS-experienced clinic can help you access specialized care and plan for changing needs. ALS clinics vary in the services they provide. Some primarily offer neurologist-led care, while multidisciplinary clinics bring together specialists across several areas of ALS care. Research suggests that multidisciplinary care may also be associated with longer survival. Even a smaller clinic can be a valuable starting point for care and referrals. Ultimately, the most important step is to connect with an ALS-experienced clinic.
At a multidisciplinary clinic, your care team may include:
Neurologist, who manages diagnosis, medication, and overall neurological care
Pulmonologist and respiratory therapist, who monitor breathing and help with breathing support as needs change
Speech-language pathologist, who supports communication and swallowing
Dietitian, who helps maintain nutrition and weight
Physical and occupational therapist, who support mobility and help adapt your home and daily routines
Neuropsychologist or cognitive specialist, who can help address cognitive, behavioral, or emotional changes that may occur with ALS.
Social worker, who helps navigate insurance, disability benefits, and home care resources
Regular clinic visits allow your team to monitor progression and adjust support as needs change. Multidisciplinary clinics can also simplify coordination by allowing you to see several specialists in a single visit.
You don’t need every specialist involved right away. Your team can evolve as your needs change.
Bring a family member or friend if you can; a second set of ears helps. Starting a simple record of test results and appointment notes, even just a shared document or folder, tends to make later appointments easier.
An ALS diagnosis can affect your eligibility for certain benefits, and several federal programs offer special provisions for people living with ALS. Understanding what may be available early can help you access support and plan for changing needs.
This may include:
Social Security Disability Insurance (SSDI): People with ALS who qualify are exempt from the standard five-month waiting period for disability benefits.
Medicare: Eligible people with ALS do not have to wait the standard 24-month period for Medicare coverage.
Medicaid: Eligibility and available services vary by state and may include healthcare and long-term services and supports.
Veterans benefits: Eligible veterans with ALS may qualify for healthcare, disability compensation, caregiver support, and other benefits.
Existing coverage: Health insurance, disability and life insurance, and employer benefits may provide additional support as your needs change.
Some decisions related to ALS are helpful to understand early because your needs may change and some options can become more limited as the disease progresses. Learning about them now doesn’t mean you have to make every decision today.
Voice banking: Recording your voice early can preserve the option of creating a personalized synthetic voice if speech becomes more difficult.
Nutrition support: Understanding options for nutrition and swallowing support can help you prepare for changes that may occur over time.
Breathing support: Learning about different forms of respiratory support can help you consider your preferences before your needs change.
Planning ahead: Documenting your wishes for future care and identifying people you trust to make decisions on your behalf can help ensure your preferences are understood.
Your ALS care team can help you understand what may be time-sensitive, what can wait, and which options may be appropriate for you.
While there is currently no cure for ALS, researchers are working to better understand the biology of the disease, identify new therapeutic targets, develop biomarkers, and test potential treatments. Target ALS brings together researchers, industry partners, and people living with ALS to help move promising discoveries toward treatments faster.
Research advances because people choose to participate, whether through clinical trials, natural history studies, or by donating biosamples. Visit our Participating in Research page to learn what’s involved and how to find a study.
Frequently asked questions
ALS progresses differently for every person. While ALS is progressive, there is no single timeline for how quickly symptoms will change or which symptoms will appear first. Your ALS care team can help you understand and monitor changes over time.
Most ALS cases are sporadic, meaning they occur without a known family history. About 10% of cases are familial, meaning a genetic mutation associated with ALS has been inherited. Genetics can also play a role in some people without a known family history, so you may want to discuss genetic testing and counseling with your care team.
Many people continue working after an ALS diagnosis, but whether and for how long depends on your symptoms, the type of work you do, and your individual circumstances. Your care team and a social worker can help you think through workplace accommodations, disability benefits, and other options as your needs change.
Your ALS care team can help you identify clinical trials that may be appropriate for you. Each trial has specific eligibility criteria, and meeting those criteria does not necessarily guarantee enrollment.
Clinical trials are only one way to participate in ALS research. There are observational research studies that may also collect health information, biosamples, or other data to help scientists better understand ALS. Target ALS conducts observational research through the ALS Global Research Initiative (AGRI), which includes studies designed to expand participation and improve our understanding of the disease.
The information in this Resource Center is for general educational and informational purposes only and is not intended as medical, health, legal, financial, or insurance advice.
Target ALS is a medical research foundation and does not provide medical care or professional advice. This information should not be used as a substitute for guidance from qualified healthcare providers or other professionals familiar with your individual circumstances. Information about treatments, benefits, insurance coverage, and other resources may change over time. Please consult the appropriate healthcare provider, government agency, insurer, or other qualified professional for information specific to your situation.
If you are experiencing a medical emergency, call 911 or go to your nearest emergency room.
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