Collaboration is at Our Core…and Spurring Innovation Along the Way

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

Since our founding in 1985, we have put collaboration at the forefront of everything we do. The gift of the ALS Ice Bucket Challenge in August 2014 gave us the unique opportunity to up our game in establishing innovative research partnerships around the world.

We continue to foster those partnerships throughout the ALS community today. Our partnerships span to all areas, from academic institutions and researchers, to industry (biotech and pharmaceutical) partners, to government organizations, to other nonprofit organizations.

Continue reading Collaboration is at Our Core…and Spurring Innovation Along the Way

New Review Focuses on the Connection of Disturbances in RNA-Binding Proteins to ALS

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

In the May 2018 issue of Frontiers in Neuroscience, current The ALS Association-funded researchers, Drs. J. Paul Taylor and Maria Purice of St. Jude Children’s Research Hospital in Memphis, published a comprehensive mini-review describing disease pathways that cause ALS, with a focus on mutations in RNA-binding proteins.

Many recent innovations in ALS animal and cells models that were instrumental in understanding the role of RNA-binding proteins in ALS are described.

Dr. Purice is a current Milton Safenowitz fellow who is currently studying how molecular pathways lead to both inherited (in which researchers have identified mutated ALS genes) and sporadic (non-inherited) forms of ALS, with a focus on RNA-binding protein, TDP-43.

In this review, Drs. Purice and Taylor do a deep dive into how disturbances in RNA-binding proteins, including TDP-43, cause ALS.

Continue reading New Review Focuses on the Connection of Disturbances in RNA-Binding Proteins to ALS

ALS Community Workshop: How to Attend the Live Stream, Ask Questions, and Make Comments

On Thursday, July 12, the ALS community will have the opportunity to meet with representatives from the FDA and the pharmaceutical industry during an ALS Community Workshop in order to discuss the latest FDA guidance document related to ALS drug development.

The Workshop will be streamed live on our ALS Community Workshop webpage, Facebook page, and YouTube channel from 9:00 a.m. EDT to 3:00 p.m. EDT.

Both in-person and online attendees will be able to ask questions and comment. Continue reading for instructions on submitting questions and comments that may be addressed during the Workshop.

If you plan on attending the (online) live stream event, please register here: https://thealsassociation.formstack.com/forms/signup.

Continue reading ALS Community Workshop: How to Attend the Live Stream, Ask Questions, and Make Comments

Pison Technology Ignites Innovation to Help People With ALS Communicate

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

Frustrated with the limited availability of assistive technology devices for his mother, who was diagnosed with ALS, Dexter Ang quit his finance job, partnered with David Cipoletta, an underwater robotic engineer, and set to work developing technologies that could universally, massively, and quickly improve the quality of life for people living with ALS.

Dexter and David named their start-up Pison Technology after Ang’s mother’s cat, who provided her with comfort.

“It was an honor for us to participate in and win a prize at the Assistive Technology Challenge because it validated that our technology is at the forefront of innovation for people with ALS,” said Dexter. “The world needs technologies like ours to be able to help all patients worldwide. The ALS Association, along with NASA, will be major partners with us as we do our research and as we begin distribution and sales of our product worldwide.”

Continue reading Pison Technology Ignites Innovation to Help People With ALS Communicate

How the ALS Ice Bucket Challenge Has Helped Spur Gene Discoveries

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with ALS to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of the disease forever.

Before the ALS Ice Bucket Challenge, The ALS Association allocated $6 million annually to funding ALS research. After the ALS IBC, the Association has budgeted about $18 million per year to research and has so far committed $84 million to ALS research. From this investment, there has been massive payoff in a significant increase in ALS gene discoveries.

SOD1 was the first ALS gene discovered, in 1993. Since then, over 30 genes have been reproducibly linked to ALS. And in the almost four years since the ALS Ice Bucket Challenge, five new ALS genes have been discovered and validated to contribute to the development of ALS – KIF5A, NEK1, C21orf2, TUBA4A, and TBK1. This rate of gene discovery is the highest in ALS history.

Every new ALS gene discovered represents a new ALS therapeutic target. The more ALS therapeutic targets identified, the more likely that a treatment will be found.

The ALS Association has been committed to gene discovery since its founding in 1985. It has supported research that contributed to all the major gene discoveries in the graph below.

Gene discovery graph.jpg

Continue reading How the ALS Ice Bucket Challenge Has Helped Spur Gene Discoveries

Dr. Stephen Goutman: Passionate Clinician Dedicated to Improving the Lives of People with ALS

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of ALS forever.

We are joined today by Dr. Stephen Goutman, an associate professor of neurology at the University of Michigan and the director of Michigan Medicine’s ALS Center of Excellence and Multidisciplinary ALS Clinic. The clinic was recently awarded an ALS Association Clinical Management grant to support Dr. Goutman’s important study aimed at improving non-invasive ventilation for people with ALS through the use of custom-printed 3D masks.

Goutman is a neuromuscular-trained neurologist with clinical and research expertise in ALS. His major research interest is identifying environmental risk factors of ALS, with a particular focus on the State of Michigan.

Goutman received a career development award (K23) from the National Institute of Environmental Health Sciences (NIEHS) to pursue this work. Inspired by his patients, he leads a team of providers that strive to deliver comprehensive and compassionate care to persons with ALS and their families. This inspiration drives Dr. Goutman to not only identify new causes of ALS but also to develop improved therapeutic strategies.

Goutman partnered with Dr. Glenn Green, an associate professor of Otolaryngology-Head and Neck Surgery at University of Michigan, to determine if customizing a non-invasive mask interface using 3D printing technology could improve the use of non-invasive ventilation in a person with ALS.

Continue reading Dr. Stephen Goutman: Passionate Clinician Dedicated to Improving the Lives of People with ALS

Meet Dr. Megan McCain: A Bright, Young Researcher Dedicated to Discovering New ALS Therapeutics

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with ALS to live their lives to the fullest. During June and July, we are celebrating some of the key innovations helping us change the nature of the disease forever.

Today, we are happy to be joined by Dr. Megan McCain, an assistant professor of Biomedical Engineering and Stem Cell Biology and Regenerative Medicine at the University of Southern California (USC), an ALS researcher who recently received an investigator-initiated starter grant award from The ALS Association. These awards are designed to help bright researchers start their own labs to answer their own innovative questions addressing ALS disease.

Dr. McCain is dedicated to discovering new potential ALS therapeutics and better understanding ALS disease mechanisms using a unique and innovative tool called “Skeletal Muscle on a Chip.”

Continue reading Meet Dr. Megan McCain: A Bright, Young Researcher Dedicated to Discovering New ALS Therapeutics