AdvocacyRSSToday
A caregiver shares his personal story about losing his wife Mary Ann to ALS (a disease that affects nerve cells controlling muscles) after 34 years of marriage. The article describes their medical journey, which began with neurologic symptoms in 2011 and initially included a misdiagnosis of Parkinson's disease before she was correctly diagnosed with ALS.
WHY IT MATTERSThis personal account highlights the diagnostic challenges ALS patients face—Mary Ann was initially misdiagnosed with Parkinson's disease—which is important for newly symptomatic patients to understand they may need multiple evaluations before getting an accurate diagnosis.
ResearchRSSYesterday
Scientists discovered that people with ALS who carry a specific gene variant called APOE4 (known to increase Alzheimer's risk) are more likely to have toxic protein clumps spread to more areas of their brain. This suggests the same gene may affect how disease progresses differently in ALS patients. The finding could help doctors better understand why ALS affects people differently.
WHY IT MATTERSIf you have ALS and carry the APOE4 variant, this research suggests you may experience different patterns of disease progression, which could eventually help doctors predict outcomes and tailor treatment approaches for individual patients.
NewsRSS2 days ago
This article shares a personal story from a caregiver whose husband Todd has ALS (a disease that causes paralysis and muscle weakness). While showering and caring for her husband, she discovered a song called 'Mercy Now' that resonated with the challenges the ALS community faces. The piece highlights the emotional and physical toll of living with ALS on both patients and their families.
WHY IT MATTERSCaregivers of ALS patients often experience isolation and emotional burden—this story validates those experiences and may help others feel less alone in their caregiving journey.
GrantRSS2 days ago
A company called Outsee won a major award worth about $10 million to use artificial intelligence and patient genetic information to find new ways to treat ALS, a disease that affects nerve cells in the brain and spinal cord. This award is part of a larger global competition called the Longitude Prize on ALS that aims to speed up the discovery of new treatments for this serious condition.
WHY IT MATTERSThis funding could accelerate the discovery of new ALS treatment targets by combining AI technology with real patient genetic data, potentially leading to novel therapies for a disease with limited treatment options.
ResearchRSS3 days ago
A new study found that statin drugs, which lower cholesterol, do not slow down ALS or change how long people with ALS live. This means doctors should prescribe statins to ALS patients based on their cholesterol levels, not because of their ALS diagnosis.
WHY IT MATTERSIf you have ALS and high cholesterol, you can now feel confident that taking statins for your heart health won't interfere with your ALS treatment or make your disease worse.
ResearchRSS4 days ago
Scientists found that some people with ALS get worse faster than others because of differences in how their immune cells cause inflammation. The study shows that the amount of inflammation in the spinal cord isn't the main factor — instead, it's the type of immune activity that matters. This discovery could lead to new treatments that slow down ALS by targeting specific inflammatory markers.
WHY IT MATTERSIf doctors can identify which inflammatory markers predict faster progression, they may be able to personalize treatment plans and potentially slow disease advancement for individual ALS patients.
Clinical trialRSS5 days ago
A company called Neurizon Therapeutics has been approved to test a new liquid version of a drug called NUZ-001 in Australia. This drug is being developed to treat ALS, a disease that affects nerve cells and causes muscle weakness. The company is testing this liquid form in healthy volunteers, while a tablet version of the same drug is already being tested in a larger trial in the United States.
WHY IT MATTERSIf the liquid formulation proves safe and effective, it could offer ALS patients an easier-to-take alternative to a tablet, which may improve medication adherence for people with swallowing difficulties—a common symptom of ALS.
NewsRSSMay 15
A caregiver reflects on her late husband's life on what would have been his 66th birthday. He died from ALS (a disease that affects nerve cells controlling muscles) just five years after his diagnosis in 2018. The article shares how his illness and life changed her perspective on living fully.
WHY IT MATTERSThis personal story from an ALS caregiver highlights the rapid progression of the disease and the emotional impact on families, which can help newly diagnosed patients and their loved ones feel less alone in their experience.
ResearchRSSMay 15
Scientists have created a new medicine made from RNA (a molecule similar to DNA) that may help reduce clumping of a protein called TDP-43 in people with ALS. ALS is a disease that affects nerve cells and causes muscle weakness. This new therapy works by stopping the protein from clumping together, which is a major problem in ALS. The research team studied exactly how this medicine works at the molecular level.
WHY IT MATTERSThis research targets TDP-43 clumping, which is a core driver of ALS neurodegeneration, potentially offering a disease-modifying approach for patients who currently have limited treatment options.
NewsRSSMay 14
A person living with ALS is exploring the concept of radical acceptance — choosing to accept their diagnosis rather than going through denial, anger, and depression. The article discusses how a behavioral scientist and his wife used this approach when facing a terminal cancer diagnosis, and how someone with ALS is trying to apply this same mindset to their own condition.
WHY IT MATTERSFor people with ALS facing a progressive, life-limiting diagnosis, learning coping strategies like radical acceptance may help improve quality of life and emotional well-being during treatment and disease progression.
AdvocacyRSSMay 14
A person shares their family's experience after their father was diagnosed with ALS, a serious disease that gets worse quickly. The article talks about how families suddenly have to learn about a disease they don't understand and search for answers and care. This is a personal story about what it's like when someone you love gets diagnosed with ALS.
WHY IT MATTERSThis article highlights the urgent need for faster diagnosis and care pathways in ALS, where families have limited time to find answers before the disease progresses.
AdvocacyRSSMay 14
Dutch Bros coffee is holding its annual fundraiser on May 15 called Drink One for Dane Day of Giving. The company will donate $1 from every drink sold to support ALS research and awareness. This event honors Dutch Bros co-founder Dane and helps raise money to fight the disease.
WHY IT MATTERSThis fundraiser provides direct financial support to ALS research and awareness efforts, helping accelerate the search for treatments and improving visibility for a disease that affects thousands of people.
AdvocacyRSSMay 13
A person with ALS connected with another ALS patient from the U.K. through an online event and found it helpful to talk with someone who understands the disease. The article highlights how online forums and virtual events help ALS patients feel less alone and share useful information with each other, even across different countries.
WHY IT MATTERSFor ALS patients who often experience isolation due to the progressive nature of the disease, online communities provide direct access to peer support and practical insights from others living with the same condition.
PipelineRSSMay 13
The FDA has given special fast-track status to COYA 302, an injection treatment being developed by Coya Therapeutics for ALS (a disease that weakens muscles over time). Early testing showed it might slow down how quickly the disease gets worse in a small group of patients. Fast-track status means the FDA will review this treatment more quickly than usual to help get it to patients faster.
WHY IT MATTERSALS patients now have a potential new treatment option moving through FDA review faster than standard timelines, which could mean access to COYA 302 years sooner if clinical trials continue to show benefit.
NewsRSSMay 12
This article invites people to take a quiz about how CHAPLE disease works in the body and see how their knowledge compares to other people who took the same quiz. CHAPLE is a rare genetic disease, and understanding how it develops and affects the body is important for patients and caregivers. The quiz helps test what you know about the disease's mechanisms.
WHY IT MATTERSFor CHAPLE disease patients and caregivers, understanding the disease's underlying biology can help you have more informed conversations with your doctor and better understand your diagnosis and treatment options.
GrantRSSMay 12
The ALS Association is giving out $3 million in grants to help people with ALS get medical care in areas that don't have many specialists nearby. This money comes from a larger $58 million donation and will help set up new ALS clinics in communities that are far from major hospitals.
WHY IT MATTERSIf you have ALS and live in a rural or underserved area, this funding could help bring specialized care closer to your home instead of requiring long-distance travel to major medical centers.
ResearchRSSMay 11
Scientists found that a system in nerve cells that normally cleans up damaged proteins isn't working properly in people with ALS (a disease that affects movement). This broken cleanup system might be a target for new treatments that could slow down ALS. The discovery could lead to therapies that help these nerve cells work better.
WHY IT MATTERSIf researchers can develop drugs that fix this protein recycling system, it could offer a new way to slow ALS progression by addressing a root cause of nerve cell damage rather than just treating symptoms.
ResearchRSSMay 8
A new free tool called SAVA AI has been launched to help people with ALS (a disease that affects nerve cells controlling muscles) quickly find clinical trials they might be able to join. The tool uses artificial intelligence to match patients with research studies in seconds through a website or mobile app. This makes it easier for ALS patients to discover opportunities to participate in medical research.
WHY IT MATTERSALS patients now have a fast, free way to discover clinical trials they're eligible for without spending hours searching multiple websites or calling research centers.
ResearchRSSMay 8
Scientists are developing new treatments for ALS, a serious disease that affects nerve cells and muscles. These treatments work in different ways—some target genes, others help the immune system, and some use new methods to deliver medicine to the brain. While ALS is still very serious, people are living longer with better care, and doctors hope these new treatments will help slow down the disease.
WHY IT MATTERSIf you or a loved one has ALS, this news means multiple new treatment approaches are in development that could slow disease progression or eventually modify the underlying disease process, offering hope beyond current symptom management.
NewsRSSMay 8
ALS progresses differently depending on where symptoms start (in the mouth and throat area versus the arms and legs), whether a person has specific genetic mutations, and how quickly their abilities decline. Doctors measure this decline using a standardized test called the ALSFRS-R to understand each patient's disease pattern and help guide treatment decisions.
WHY IT MATTERSUnderstanding your specific ALS subtype—based on where symptoms began and whether you carry genetic mutations like C9orf72 or SOD1—helps your doctor predict disease progression and choose the most appropriate disease-modifying treatments and symptom management strategies for your situation.