Watch “Mr. Connolly Has ALS” Online Now!

“Life is full of challenges,” said Gene Connolly. “We get little say in what happens to us, but everything to say in how we deal with it. In fact, our response will define us.”

The short film, “Mr. Connolly Has ALS,” about a beloved Concord High School (Concord, N.H.) principal’s journey with ALS and his 14th and final year at Concord, had its public television broadcast debut on June 11 and is available to stream online throughout the U.S. until July 11.

Documentary filmmaker, Dan Habib, beautifully captured Gene Connolly’s positive spirit and humor as his disease progressed and he lost the ability to walk and speak. During the film, Gene, an educator for more than 35 years, sits down with some of the 1,600 students he served as principal, to answer their questions and give some final advice.

Continue reading Watch “Mr. Connolly Has ALS” Online Now!

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

Guest Post: Young Caregivers Received Special Training and Support at National ALS Advocacy Conference

By Dr. Melinda S. Kavanaugh, Associate Professor of Social Work, Helen Bader School of Social Welfare, University of Wisconsin-Milwaukee

“It was nice to connect with other people and it made me feel less alone.” (YCare training participant)

For many children and young adults in families with ALS, this is a common refrain; they feel alone and isolated from their peers, especially if they are involved in caring for their loved ones. These young caregivers often help with care tasks, yet have little training or guidance in how to do the specific tasks.

With this in mind, my colleagues and I conducted a study of youth and families in ALS that was funded by The ALS Association. Over 60 percent of respondents said they had no training, despite being involved in care tasks ranging from bathing and feeding family members, to transferring and using complicated assistive devices.

In addition to the data on whether youth received training, I asked how they knew what to do. Responses ranged from “winging it” to “using common sense.” As evidenced in the introduction quote, not only are youth minimally trained, but they have also little social support from peers.

Continue reading Guest Post: Young Caregivers Received Special Training and Support at National ALS Advocacy Conference

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