Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease) is a life-changing disease for people living with it, their families, and their communities.
ALS is unrelenting, but so are we.
About ALS
ALS at a glance
~30k
people in the U.S. live with ALS today
10%*
of ALS cases are due to genetics
*up to
2-5
year average life expectancy after diagnosis
The basics of a relentless disease
ALS is an irreversible degenerative disease of motor neurons, which are the nerve cells in the spinal cord and brain that control muscles. While people’s minds remain acute, ALS hinders all of their movement, including breathing, swallowing, talking, and walking, among other daily activities.
The onset of ALS typically occurs between the ages of 40-70, although the disease can be diagnosed earlier or later. The condition can affect individuals of all races and ethnic backgrounds. In general, slightly more men than women are affected. However, ALS progression is highly variable, and the disease does not follow the same course for every individual in terms of origin and speed of progression. In some people, ALS progresses more slowly for an unknown reason.
All of these causes and uncertainties motivate our innovative research approach, which aims to accelerate research and breakthroughs at a pace faster than ALS progresses.
Through the research we fund, enable, and conduct, we’re unlocking insights to better understand ALS and develop effective treatments as fast as possible.
Distinctions in types of ALS
Approximately 90% of ALS is sporadic, meaning it arises without an inherited genetic cause or family history of the disease. However, approximately 10% of cases are familial, meaning a specific gene mutation that increases ALS risk was inherited by an individual diagnosed with ALS.
Sporadic ALS
The most common form of ALS in the United States—accounting for approximately 90% of cases. It occurs without a family history of the disease.
Familial ALS
A rarer, inherited form of ALS. However, recent genetic discoveries suggest hereditary cases may be more common than previously understood. Although ALS may run in a family, the specific gene mutation that causes a family’s diagnosis may still be unidentified.
Symptoms and diagnosis of ALS
Initial signs
Early symptoms of ALS vary and can include: muscle twitches in the arm, leg, shoulder, or tongue, muscle cramps, tight and stiff muscles, muscle weakness, slurred and nasal speech, and difficulty chewing or swallowing. As the disease progresses, the symptoms usually spread to other parts of the body.
Approximately 30% of individuals diagnosed with ALS will also experience cognitive impairment or other behavioral symptoms of frontotemporal degeneration [FTD].
There is also a preclinical phase of ALS, where individuals are not yet symptomatic, that can be highly variable and can last many years.
Diagnosis
ALS is mainly diagnosed through a combination of observing symptoms during a physical examination, reviewing the person’s medical history, and conducting tests to exclude other conditions. Regular neurological evaluations help monitor the progression of symptoms like muscle weakness, muscle wasting, and spasticity.
There is no single diagnostic test for the disease. Instead, doctors look for patterns and seek to eliminate alternatives, which means that it can take months, if not years, for an ALS diagnosis.
Changing what it means to be diagnosed
An ALS diagnosis can disrupt lives—both for the person living with the disease and their family. We are powering research to better understand the causes, progression, and treatment of ALS so that we can change its trajectory and bring hope to people facing it.
Research we fund
We invest in science that’s unlocking insights and discoveries faster.
Research we enable
We ensure that science thrives by providing researchers with open access to data and tools.
Research we conduct
We help scientists better understand ALS by conducting studies that expand ALS research.
“Keep going. Entire lives depend on this dedication. We have admiration for the scientists and caregivers fighting this disease. Progress is urgent.”
Causes of ALS
The exact cause of ALS remains unknown, but several factors are believed to contribute to its development, including genetic and environmental factors.
Genetic factors
At least 40 genes that influence ALS risk have been identified, with four genes that can have causal genetic mutations that run in families: C9orf72, TDP43, FUS, and SOD1.
The most common genetic cause of ALS is a mutation in the C9orf72 gene, which is responsible for nearly half of all familial ALS cases and about 10% of sporadic cases—as well as FTD.
Environmental factors
Other risk factors for ALS can include military history and certain types of sports-related injury or trauma.
Obstacles to understanding ALS
Despite progress that’s been made to identify ALS genes, the genetic cause remains unknown in a significant portion of ALS families and most sporadic cases. Similarly, the interaction between genetic and environmental components is not yet fully understood.
A lack of research in diverse populations and underrepresented communities has impeded progress in understanding the global occurrence and cause of ALS. We’re working to close this major gap in research by enrolling participants with greater ethnic, genetic, and geographic diversity into our ALS Global Research Initiative (AGRI)—the largest and most inclusive ALS study in the world.
Research as the highest form of care
While there is currently no cure for ALS, there are three FDA-approved drugs available to people with ALS in the U.S., including riluzole, Radicava, and Tofersen. There are also many clinical trials ongoing to test new potential therapies.
However, to truly make significant progress, we must invest in more research.
That’s why we’re here: to expand research pathways, uncover new learnings about ALS and its causes, and accelerate the development of effective treatments for every person living with ALS.
We know that the solution to ALS will not come from one single therapeutic, but from a pipeline of potential therapies and drugs entering clinical trials. More clinical trials mean more opportunities for breakthroughs—bringing us closer to effective treatments and a world where everyone lives. Continued funding is critical to advancing the research that will lead to solutions and provide hope for people and families affected by ALS. With your help, we can power more discoveries.
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