GrantRSSYesterday
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.
NewsRSS2 days ago
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.
ResearchRSS3 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.
NewsRSS3 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.
ResearchRSS3 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.
ResearchRSS3 days ago
Scientists studied how spinal muscular atrophy (SMA) damages the connections between nerves and muscles. They found that in people with SMA, these nerve-muscle connections don't develop properly right after birth, making them weak and unable to work well before nerve cells start dying. This early problem may be an important part of how SMA causes muscle weakness.
WHY IT MATTERSUnderstanding that nerve-muscle connection problems happen early in SMA—before nerve cell loss—could lead to new treatments that target this early stage rather than only treating later damage.
ResearchRSS3 days ago
Scientists found that haloperidol, a medication normally used to treat psychiatric conditions, may help treat spinal muscular atrophy (SMA) by increasing levels of a protein called SMN that is missing or low in SMA patients. In laboratory tests with mouse cells and human patient cells, haloperidol helped nerve cells survive longer, reduced harmful inflammation, and improved movement. This suggests haloperidol could potentially be used alongside or instead of current SMA treatments.
WHY IT MATTERSIf haloperidol proves effective in human trials, SMA patients could potentially benefit from a medication that already exists and is FDA-approved, potentially offering a faster path to treatment than developing entirely new drugs.
Clinical trialRSS3 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.
ResearchRSS3 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.
ResearchRSS3 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.
ResearchPUBMEDApr 10
Doctors from around the world created a network called the International Neuroblastoma Risk Group to share information about neuroblastoma, a type of cancer that starts in nerve cells. They combined data from over 25,000 patients to help researchers understand the disease better and develop better treatment plans. This teamwork model shows how rare cancer research can be improved when hospitals and countries work together.
WHY IT MATTERSPatients with neuroblastoma now benefit from standardized treatment approaches and risk classifications developed through this international collaboration, which means more consistent and potentially better care regardless of where they receive treatment.
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.