GrantRSSToday
The Muscular Dystrophy Association is holding its 26th annual fundraising gala in New York City on June 4 to raise money for ALS research. The event brings together financial leaders and medical researchers to support the search for treatments and cures for ALS, a disease that affects nerve cells controlling muscles.
WHY IT MATTERSFunding from this gala directly supports ALS research that could lead to new treatments, making it important for patients to know where research dollars are being invested and what progress is being made.
AdvocacyRSSToday
A caregiver shares her experience of learning to navigate life after her husband was diagnosed with ALS in 2018. She describes how she went from knowing almost nothing about the disease to becoming an active member of the ALS community. The article focuses on the emotional journey and finding support during a difficult time.
WHY IT MATTERSFor ALS caregivers and newly diagnosed patients, this personal account provides practical insights into building a support network and coping strategies during the early, overwhelming months after diagnosis.
ResearchRSSYesterday
A study of 121 people with ALS found that those who kept their weight more stable after starting tube feeding lived longer. This was true even if they weren't eating a lot of calories when they first started the tube feeding. The finding suggests that preventing weight loss after tube feeding may help people with ALS live longer.
WHY IT MATTERSIf you or a loved one with ALS is considering or has started tube feeding, this research suggests that working with your care team to maintain steady weight—not just calorie intake—could potentially extend survival.
NewsRSSYesterday
This is a personal story about a man with ALS (a disease that affects nerve cells and causes muscle weakness) and how his dog Comet has become an important part of his life. As Todd's mobility has decreased over time, he's found creative ways to spend time with Comet, like riding on a scooter with the dog. The story shows how pets can bring joy and connection to people living with serious illnesses.
WHY IT MATTERSFor people with ALS and their caregivers, this story demonstrates how adaptive strategies and pet companionship can maintain quality of life and emotional well-being as the disease progresses.
NewsRSS2 days ago
A person living with ALS shares their experience learning to use ankle-foot orthoses (AFOs), which are braces that help with walking. At first, they didn't want to use them because they represented another big life change after their ALS diagnosis. But through trial and error, they found ways to adapt and make the braces work for them.
WHY IT MATTERSThis personal account offers practical insights into managing mobility challenges with ALS, which can help newly diagnosed patients understand what to expect and how others have successfully adapted to assistive devices.
Clinical trialRSS2 days ago
A new drug called masitinib helped ALS patients live longer than expected. In a clinical trial, over 40% of patients treated with masitinib survived for at least 5 years from when their disease started. This is much better than the typical outcome, where fewer than 25% of ALS patients usually live that long.
WHY IT MATTERSIf masitinib gains approval, ALS patients may have access to a treatment that could significantly extend their survival time compared to current standard care.
PolicyRSS2 days ago
Doctors are now recommending that all ALS patients get genetic testing to understand if their disease is inherited. A genetic counselor is a specialist who helps explain what these test results mean and how they might affect family members. Understanding your genetic information can help you and your doctor make better decisions about your care and family planning.
WHY IT MATTERSIf you have ALS, genetic testing and counseling can reveal whether your condition is hereditary, which affects whether your relatives should be screened and what treatment options might work best for you.
NewsRSS2 days ago
An ALS caregiver shares how reading a novel about a woman with cancer helped her process difficult emotions and questions she faces while caring for her husband who has had ALS for 16 years. The article explores how literature can be a meaningful tool for caregivers dealing with serious illness in their families. It highlights the emotional and psychological challenges that come with long-term caregiving.
WHY IT MATTERSALS caregivers often experience isolation and emotional burden — this article validates that seeking emotional support through creative outlets like reading is an important part of managing caregiver wellbeing.
ResearchRSS2 days ago
Scientists discovered that a protein called UBQLN2 helps nerve cells manage both proteins and fats. When UBQLN2 doesn't work properly — especially in controlling fats — it may cause nerve cells to die in ALS, a disease that weakens muscles over time. This discovery suggests doctors might be able to help nerve cells stay healthier by fixing how fats are controlled.
WHY IT MATTERSUnderstanding how fat regulation breaks down in ALS nerve cells could lead to new treatments that target this specific problem, potentially slowing or stopping nerve cell damage in people living with ALS.
NewsRSS2 days ago
A person living with ALS is sharing their experience about staying active and maintaining muscle strength. They were unsure whether to write about this topic because they worried people might misunderstand their message. The author emphasizes that everyone with ALS may need to find their own approach to managing the disease.
WHY IT MATTERSThis personal perspective helps ALS patients understand that maintaining mobility is individual—what works for one person may not work for another, so they shouldn't feel pressured to follow someone else's exact approach.
NewsRSS2 days ago
A doctor named Richard Lewis shares his approach to telling patients they have ALS (a disease that affects nerve cells that control muscles). The article focuses on how he explains the diagnosis, talks about things that are uncertain, and helps patients and families cope with the news.
WHY IT MATTERSLearning how doctors communicate an ALS diagnosis can help patients and families understand what to expect when receiving their own diagnosis and how to have better conversations with their care team.
ResearchRSS2 days ago
A new study from Denmark found that people with higher levels of HCB (a pesticide that was banned in many countries) in their blood may have a higher risk of developing ALS, a disease that affects nerve cells and causes muscle weakness. HCB was used as a pesticide in the past but is no longer allowed in many places because it can be harmful to health. This research suggests that exposure to this old pollutant might be connected to ALS risk.
WHY IT MATTERSIf you have ALS or a family history of it, understanding environmental risk factors like HCB exposure could help you and your doctor identify potential causes and discuss ways to reduce exposure to similar pollutants.
NewsRSS2 days ago
Pseudobulbar affect (PBA) is a condition where people with ALS have sudden, uncontrollable crying or laughing that doesn't match what they're actually feeling. A doctor named Richard Lewis explains what causes PBA, what it looks like, and shares a specific question he uses to ask patients about it—because many people don't mention this symptom unless directly asked.
WHY IT MATTERSMany ALS patients experience PBA but don't report it to their doctors, so learning the screening question could help you get diagnosed and treated for this treatable symptom that affects quality of life.
Clinical trialRSS2 days ago
AB Science is preparing to test an experimental drug called masitinib for ALS (a disease that affects nerve cells that control muscles). To protect their investment in this large clinical trial, the company bought special insurance that would reimburse them if the trial doesn't go as planned or costs more than expected.
WHY IT MATTERSThis insurance arrangement signals that AB Science is confident enough in masitinib to move forward with Phase 3 testing in ALS patients, which is a critical step toward potentially bringing a new treatment option to people living with this progressive disease.
ResearchRSS2 days ago
A large study in the UK followed over 500,000 people for about 10 years and found that breathing polluted air for a long time does not appear to increase the risk of getting ALS, a disease that affects nerve cells that control muscles. Fewer than 1,000 people in the study developed ALS during the study period. This suggests that air pollution may not be an important risk factor for developing ALS.
WHY IT MATTERSIf you have ALS or are worried about developing it, this study suggests that long-term air pollution exposure is unlikely to be a major cause, which may help reduce anxiety about environmental risk factors you cannot easily control.
ResearchRSS2 days ago
Scientists discovered that some people with ALS (a disease that affects nerve cells controlling muscles) may develop the condition from new mutations that happen by chance in their nerve cells, rather than inheriting the mutation from their parents. This is different from inherited ALS cases where a parent passes down a faulty gene. This finding suggests there are multiple ways ALS can develop, which could help doctors better understand and treat the disease.
WHY IT MATTERSIf your ALS diagnosis is sporadic (not inherited), this research suggests your condition may have developed from random mutations in your nerve cells rather than a genetic predisposition, which could change how doctors approach your treatment and genetic counseling.
NewsUNITERAREApr 3
The PAN Foundation's financial assistance fund for ALS (a disease that affects nerve cells controlling muscles) is currently closed and not accepting new applications. This fund previously provided up to $12,000 per year to help patients pay for treatment costs. The fund status changed on April 2, 2026.
WHY IT MATTERSIf you have ALS and were counting on this $12,000 annual assistance from PAN Foundation, you'll need to explore other financial resources immediately, as this fund is no longer available.