Rare Disease Day is an opportunity to join forces and raise awareness

Growing up, I always associated the month of February with Valentine’s Day, a holiday filled with hearts and flowers. But now that I live with ALS, the holiday is nowhere near as important to me as Rare Disease Day on Feb. 28. ALS is among the many…

A small Phase 2 clinical trial is evaluating the safety and tolerability of investigational treatment candidate EPI-589 in adults with amyotrophic lateral sclerosis (ALS). The EPIC-ALS trial (jRCT2061210031), being conducted in Japan, will also assess exploratory effectiveness outcomes after six months of treatment. Data collection began in September…

A wearable robotic device that helps lift the shoulders to support arm movements can make it easier for people with amyotrophic lateral sclerosis (ALS) to do daily tasks, a new study reports. Using the lightweight device — now a fabric-based robot prototype — led to significant improvements in upper…

When baseball legend Lou Gehrig was diagnosed with ALS in 1939, unfortunately, not much about the disease was being discussed at the time. Instead, Gehrig’s career and baseball prowess dominated the news and public discourse. His larger-than-life persona was well deserved, but his illness was also larger than…

While my late husband, Jeff, was living with ALS, there was a place where we both felt supported and hopeful, his disease understood. Driving through the streets of Baltimore as we wound our way toward the Johns Hopkins ALS Clinic, I could’ve felt trepidation, as sometimes on clinic…

The Phase 2b trial testing PrimeC in people with amyotrophic lateral sclerosis (ALS) will no longer enroll patients in the U.S., its maker NeuroSense Therapeutics has announced. Meanwhile, the company has been given the green light from regulatory agencies in Germany and Canada to enroll new participants,…

More than a dozen years ago, my friend Jana helped me process my grief after my husband, Todd, was diagnosed with ALS. She and I walked around our neighborhood, pushing our babies in strollers as our toddlers rode their bikes. Jana listened and didn’t offer platitudes. We now…

AC Immune has been awarded more than $500,000 in nonprofit grants by the Michael J. Fox Foundation (MJFF) and the Target ALS Foundation to support its programs to detect abnormal forms of the TDP-43 protein via imaging scans and fluid samples. “It is an honor to have…

A Phase 1/2 clinical trial testing the investigational imaging agent 18F-OP-801 in healthy volunteers and people with amyotrophic lateral sclerosis (ALS) has enrolled its first patient. Ashvattha Therapeutics‘ agent is designed to detect inflammation in imaging exams like positron emission tomography (PET) or MRI scans. This is possible…

Even though I continue to practice daily voice skills to help me prepare for in-person conversations, I’m still challenged by the pronunciation of certain words. Often, I avoid the word altogether and use a simpler version. Or I simply plow ahead, slurring and bumbling my way and relying on lots…