February 11, 2022 Dear NINDS, As we set our sights on shaping the strategic future of ALS research, we thank you for the opportunity to identify key research and priorities at NIH and beyond. We also recognize …
Les Turner ALS Symposium Celebrates Advances in Research and Patient Care
BY MELISSA ROHMAN ON NOV 4, 2021 Northwestern scientists and clinicians demonstrated their continued commitment to advancing knowledge and therapies for amyotrophic lateral sclerosis (ALS) during the 11th annual Les Turner Symposium on ALS. The virtual, daylong symposium featured scientific presentations highlighting the molecular …
Biogen Briefing Notes – Scientific Advisory Council (SAC)
The following note is being passed along from the Board of Directors of the International Alliance of ALS/MND Associations… The Board of Directors of the International Alliance of ALS/MND Associations is pleased to provide information for Member Associations in the …
AMX0035 May Slow ALS Progression and Extend Life
On September 15, Amylyx Pharmaceuticals announced its intention to submit a New Drug Application to the FDA for AMX0035 for the treatment of ALS. If the New Drug Application is successful, AMX0035 would be only the third drug approved by …
Les Turner ALS Foundation’s Andrea Pauls Backman Advocates for «Bold, Urgent Methods» to Improve Access to Potential ALS Treatments
In response to a recent congressional hearing focused on the slow pace of drug approvals for neurological diseases, Les Turner ALS Foundation’s CEO Andrea Pauls Backman spoke with Suz Redfearn, a reporter for FDA News. Andrea was quoted extensively in …
Neuromuscular Disease Community Calls for Passage of ACT for ALS (H.R. 3537)
On July 13, 2021 the Les Turner ALS Foundation and 19 other advocacy organizations sent a letter to call on the House of Representatives to pass the ACT for ALS Act (H.R.3537) as soon as possible, and no later than …
Finding Hope in ALS Research and Clinical Trials
By Lauren Webb, LCSW, Director of Support Services and Education Many years ago, as I was driving along Lake Shore Drive on my way to a pediatric hospital in Chicago, with the sun beginning to rise over Lake Michigan, I …
Tips for Preventing the Spread of Respiratory Disease
As someone living with ALS or in contact with someone living with ALS, you should always take special precautions to safeguard your health and the health of those around you. People living with ALS are at an increased risk of respiratory problems …
Tagging So Others Can Take a Breath
May is ALS Awareness Month. Every year, members of our Les Turner ALS family volunteer in our annual Tag Days Drive to spread the message of hope and help and raise funds to support people living with ALS and their …
ALS Research Ambassadors Fostering Community, Influencing Change
By Gwen Gotsch I lost my 30-year-old son to ALS in July of 2017. Kris was 27 and newly married when he was diagnosed. He died just three years later. During those three years, Kris, an elementary school special ed …
