Rare Disease Groups, Patients Differ on ‘Right to Try’ Bill Before US Congress

Need for Assistive Technology Devices Often Unmet, German Study Shows

Researchers in Germany studying standards of care in amyotrophic lateral sclerosis (ALS) patients found a high unmet need for assistive technology devices. The cohort study, “Provision of assistive technology devices among people with ALS in Germany: a platform-case management approach,” was published in the journal Amyotrophic Lateral Sclerosis and…

Learning How to Speak (and Breathe) with Ease

Last month, I read a blog post from the ALS Association that made me sit up and pay attention. It told the story of a woman with ALS-related voice issues who learned specific vocal techniques normally utilized by actors to extend her ability to speak without assistive…

5 Misconceptions About ALS You Might Find Interesting

Amyotrophic lateral sclerosis (ALS) is sometimes known as Lou Gehrig disease after the baseball player who famously suffered from it. Although ALS is a more common disease than we would like it to be, there is still little known about it and many are unaware of the details of the condition. MORE: Find out…

10 Tips for Patients Recently Diagnosed With ALS

Being diagnosed with amyotrophic lateral sclerosis (ALS) is a difficult and stressful time. You’ll probably feel incredibly overwhelmed in the first few days and weeks, and struggle to understand the ramifications involved. To help with the process, we’ve compiled a list of tips for patients who have recently been diagnosed with…

Young Artist Talks About Life With ALS

https://vimeo.com/124559355 This video from the ALS Association Texas chapter is all about a talented young artist, Alexis. Alexis has loved drawing since she was a child, but the progression of her amyotrophic lateral sclerosis (ALS) condition has meant that she can now no longer draw with paper and pencils. However, she hasn’t let…