NewsRSSApr 22
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.
NewsRSSApr 22
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.
ResearchRSSApr 22
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.
NewsRSSApr 22
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.
NewsRSSApr 22
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.
ResearchRSSApr 22
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.
Clinical trialRSSApr 22
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.
ResearchRSSApr 22
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.
ResearchRSSApr 22
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.