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.
PipelineRSSMay 7
The FDA has given fast-track status to tazbentetol, a new oral medication being developed by Spinogenix for ALS (a disease that affects nerve cells that control muscles). Fast-track status means the FDA will review this drug more quickly and the company can talk with FDA regulators more often during development. This designation is given to treatments for serious diseases where there aren't many good options available.
WHY IT MATTERSFast-track designation could bring tazbentetol to ALS patients 1-2 years sooner than standard FDA review timelines, which is critical since ALS progresses rapidly and patients have limited treatment options.
NewsRSSMay 7
A caregiver shares her experience managing daily life while caring for her husband Todd, who has ALS (a disease that affects nerve cells and causes progressive muscle weakness). She describes the challenges of balancing her own activities, like a weekly ukulele group, with Todd's constant care needs, including help with eating, bathroom use, and computer setup. The article focuses on how the family navigates these challenges while raising their children.
WHY IT MATTERSThis story highlights the real-world caregiving burden that ALS families face daily, which can help other caregivers feel less isolated and find practical strategies for managing their own self-care while providing 24/7 support.
NewsRSSMay 6
A person living with ALS shares their experience managing daily challenges on a difficult day. The article describes how they adapted their approach to complete simple tasks like picking up a sock, highlighting the creative problem-solving and persistence needed to maintain independence with a progressive disease.
WHY IT MATTERSThis personal account from someone with ALS demonstrates real-world strategies for managing mobility challenges, which can help other patients and caregivers develop their own adaptive techniques for daily living.
GrantRSSMay 6
A company called Acurastem received $7.5 million in funding to help develop a new treatment called AS-241 for ALS (a disease that affects nerve cells that control muscles). Early lab studies show this treatment might be able to fix problems caused by a faulty protein called TDP-43. The company is now working to get this treatment ready to test in patients.
WHY IT MATTERSThis funding accelerates a potential new ALS treatment toward human trials, offering hope for patients with TDP-43-related ALS who currently have limited therapeutic options beyond supportive care.
PipelineRSSMay 5
A company called Clene is planning to ask the FDA to approve a new drug called CNM-Au8 for treating ALS, a disease that affects nerve cells and causes muscle weakness. The company met with the FDA and decided to use a faster approval process called accelerated approval, which can get promising treatments to patients more quickly than the standard process.
WHY IT MATTERSIf CNM-Au8 receives accelerated approval, ALS patients could gain access to a new treatment option sooner than through the standard FDA review timeline, potentially slowing disease progression.
Clinical trialRSSMay 4
A new experimental drug called dazucorilant helped people with ALS live longer when given at a higher dose, according to a Phase 2 clinical trial. While the trial didn't fully meet all its main goals, the survival benefit was significant enough to be noteworthy. This suggests the drug may have promise for treating ALS, a disease that affects nerve cells controlling muscles.
WHY IT MATTERSIf dazucorilant advances to Phase 3 testing, ALS patients may have access to a new treatment option that could extend survival, which is critical since current ALS therapies have limited effectiveness.
AdvocacyRSSMay 1
May is ALS Awareness Month, when organizations around the world work to educate people about ALS (a disease that affects nerve cells that control muscles) and raise money to help patients get better care. The Muscular Dystrophy Association and other groups are hosting events and encouraging people to support the ALS community through donations and advocacy.
WHY IT MATTERSALS Awareness Month creates focused momentum for fundraising and advocacy that directly supports access to care, treatments, and research for people currently living with ALS.
Clinical trialRSSApr 30
A company called Vectory Therapeutics has received permission to test its experimental ALS drug, called VTx-002, at hospitals in the United Kingdom and European Union. The drug is already being tested in the United States as part of a Phase 1/2 clinical trial. This expansion means more patients in Europe may have the opportunity to participate in this early-stage study of a potential new ALS treatment.
WHY IT MATTERSALS patients in the U.K. and EU now have access to a first-in-human trial for a novel therapy, potentially expanding treatment options beyond currently available medications for this rapidly progressive disease.
NewsRSSApr 30
A caregiver shares how she uses reading and writing to take care of her own mental health while caring for her husband who has ALS, a serious disease that affects the nerves. She explains that these activities help her process her emotions and give her a break from the stress of caregiving.
WHY IT MATTERSCaregivers of people with ALS face significant emotional and psychological strain, and this article highlights practical coping strategies that may help others in similar situations maintain their own wellbeing.
PolicyRSSApr 29
Families in France dealing with ALS face thousands of dollars in extra costs each year for things like wheelchairs, walkers, and paid helpers at home. Because patients and caregivers often have to stop working to manage the disease, families lose income on top of these expenses, creating a serious financial hardship.
WHY IT MATTERSIf you or a family member has ALS in France, understanding the full financial impact — including hidden costs beyond medical care — can help you plan ahead and seek available financial support resources.
Clinical trialRSSApr 28
Scientists are testing a new drug called RAG-17 for people with a specific type of ALS (a disease that weakens muscles over time) caused by a SOD1 gene mutation. Early results show the drug was safe at different doses and made important disease markers improve. This is early-stage testing, but it's a promising first step.
WHY IT MATTERSIf you have SOD1-ALS, this is one of the first treatments specifically designed for your genetic form of the disease, and early signs suggest it may slow the damage happening in your body.
ResearchRSSApr 27
A new study from Finland found that deaths from ALS (a disease that affects nerve cells controlling muscles) have nearly doubled over the last 30 years. The increase is especially noticeable in older adults. Researchers aren't sure why this is happening, and similar increases haven't been reported in other countries.
WHY IT MATTERSIf ALS death rates are rising in Finland, understanding why could help identify preventable risk factors or early warning signs that might apply to ALS patients elsewhere.
GrantRSSApr 24
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.
AdvocacyRSSApr 24
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.
ResearchRSSApr 23
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.
NewsRSSApr 23
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.
Clinical trialRSSApr 22
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.
NewsRSSApr 22
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.
PolicyRSSApr 22
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.