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.
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.
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.
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.
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.