The Medicare program at the Centers for Medicare & Medicaid Services removed noninvasive ventilators from competitive bidding for durable medical equipment. The decision will keep the devices out of competitive bidding for at least three years and is a victory for ALS advocates. The ALS Association and its partners have led an intense lobbying campaign against competitive bidding for noninvasive ventilators for more than a year. The Medicare program cited COVID-19 in announcing the move.
UPDATE: As of March 14, 2019, enrollment for the CENTAUR Phase II clinical trial has been completed. At the recent Leadership Conference for The ALS Association, Joshua Cohen and Justin Klee, CEO and president, respectively, and founders of Amylyx Pharmaceuticals, updated us on their ongoing CENTAUR phase II clinical trial. The Association is supporting their trial through ALS Ice Bucket Challenge donations, with a $2.96 million grant in partnership with ALS Finding a Cure.
News Media Services is a dedicated resource site developed for news media and journalists. This site is an essential information link for members of the news media who are developing stories about amyotrophic lateral sclerosis (ALS) and the work of the ALS Association.
ALS can be confusing, scary, embarrassing, and overwhelming – for people living with the disease as well as for the youth within their families. Young people need age-appropriate details about ALS to help reduce some of the fear and uncertainty surrounding the disease.
The ALS Association’s annual Leadership Conference earlier this month brought together leaders from all 39 chapters across the country in Irvine, Calif., to share ideas and collaborate. At this year’s conference, we were pleased to honor several heroes who are living with ALS and who have provided great inspiration to all those around them.
Only those living through the experience first-hand truly understand the challenges of being a full-time caregiver, particularly for someone living with ALS. The ability to complete basic daily tasks can be overwhelming and the need for help is great. Finding ways to help and show support for the caregiver in your life can make a huge difference for them, and for you.
Matt Miller might just be the most shameless member of ‘Team Finlay,’ having spent the last 10 years taking outlandish dares from family and friends to raise money for his cousin Jack. From sleeping on roofs to participating in water aerobics dressed like Jane Fonda, there is nothing Matt won’t do to help fight ALS.