Ice Bucket Dollars at Work: Amylyx Pharmaceuticals CENTAUR Trial is Making Headway

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.

“The ALS Association’s contribution has made a substantial difference in accelerating our clinical study, which, hopefully will result in new insights and a new therapeutic for ALS,” said Cohen. Klee added, “We are enormously grateful for their continuing support and for the support of everybody in the ALS community.”

Continue reading Ice Bucket Dollars at Work: Amylyx Pharmaceuticals CENTAUR Trial is Making Headway

Throwback Thursday: Nuedexta Trial Demonstrated Promising Results Impacting Bulbar Function in ALS Patients

For this Throwback Thursday, we’re taking it back to February 10, 2017. The article was titled, “Nuedexta Trial Demonstrates Promising Results Impacting Bulbar Function in ALS Patients.”

In the January 9, 2017, issue of Neurotherapeutics, Dr. Richard Smith, Director of the Center for Neurologic Study in La Jolla, Calif. published promising results of a phase II trial testing the effect of Nuedexta on bulbar function. Overall, he and his co-authors found that Nuedexta had a significant palliative effect on speech, swallowing, and salivation in people living with ALS. The ALS Association contributed to the funding of this trial.

To read the article from last year, click here.

Ice Bucket Dollars at Work: Researchers Uncover Critical Details of C9orf72 Repeat Expansion Translation

Research funded by The ALS Association using Ice Bucket Challenge donations recently led to a significant discovery in understanding a disease pathway behind the most frequent cause of inherited ALS and frontotemporal dementia (FTD).

Top ALS researchers published three high-impact papers in Nature Communications, delving into the underlying mechanism of how the C9orf72 gene expansion is translated into toxic proteins. Information uncovered in these papers inform therapeutic development of drugs targeting the C9 expansion, which have the potential to make an impact on the largest population of people living with familial, or inherited, ALS.

Continue reading Ice Bucket Dollars at Work: Researchers Uncover Critical Details of C9orf72 Repeat Expansion Translation

Steve Gleason Enduring Voices Act is Permanent!

The Steve Gleason Enduring Voices Act is now law!

This morning, President Trump signed the Bipartisan Budget Act of 2018 (H.R. 1892), which included the Steve Gleason Enduring Voices Act. The Act will permanently fix the current Centers for Medicare and Medicaid Services (CMS) policy limiting access to Speech Generating Devices (SGD) for people with degenerative diseases.

Read our article from earlier this week for more details.

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Photo credit: Ingfbruno – Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=27510444

Throwback Thursday: Duke, UNC Coaches United to Raise Awareness of ALS

In honor of Throwback Thursday, we’re taking it back to February 9, 2017, to an article titled, “Duke, UNC Coaches Unite to Raise Awareness of ALS.”

The men’s basketball coaching staffs of Duke University and the University of North Carolina (UNC) wore The ALS Association lapel pins on February 9, 2017, in honor of Jeff Capel, Jr., who had recently been diagnosed with ALS. Capel was the head coach at Old Dominion University (ODU) for seven seasons and also served as an assistant for the Charlotte Bobcats and the Philadelphia 76ers.

To read the article from last year, click here.

Clinical Trial: FORTITUDE-ALS is Now Enrolling

FORTITUDE-ALS is a clinical trial of an investigational oral drug for the treatment of amyotrophic lateral sclerosis (ALS). This clinical trial is now enrolling participants in both the United States and Canada.

FORTITUDE-ALS is designed to evaluate whether CK-2127107 has an effect on participants with amyotrophic lateral sclerosis (ALS) and what kind of side effects may occur in these participants taking CK-2127107.

CK-2127107 is an investigational medicine that is being evaluated as a potential new medicine which could slow the decline of skeletal muscle function in diseases and conditions associated with muscle weakness or fatigue such as ALS.

To learn more about the trial, please click here.

For a list of trial sites, please click here.

To learn more about how to participate in this clinical trial, please click here.

An Open Letter to the ALS Community

Dear Members of the ALS Community,

We wanted to clear up some misinformation floating around on social media regarding our research funding and our current assets. We also wanted to explain our approach to funding research.

Since our founding in 1985, The ALS Association has been committed to funding the best ALS research, regardless of where in the world that research is being conducted. These projects have helped lead to significant advancements in the field, including the discovery of several key ALS genes, and most recently, the development of antisense therapy, which could have major implications for ALS and other neurological diseases.

Continue reading An Open Letter to the ALS Community