Evy Reviers serves as the CEO of ALS Liga, our sister organization in Belgium and is a champion in ALS patient advocacy and care. She and her organization stepped up to partner with Dr. Desain and his team that develops NoiseTag brain computer interface (BCI), who won the ALS Assistive Technology Challenge in Dublin this past December. Through this collaboration, patients in Belgium will be able to try out the NoiseTag BCI to optimize its function and usability, thereby making it the best product possible. She sat down with us to give her perspective on ALS assistive technology and care from her vast experience as a leader of a successful ALS organization and from her personal experience as caregiving daughter of her father who lives with ALS.
A type of assistive technology, called brain computer interface (BCI), has been around for years with much room for improvement. We sat down with the 2016 ALS Assistive Technology Challenge winner, Dr. Peter Desain from Donders Institute for Brain, Cognition and Behavior in Nijmegen, The Netherlands, who invented NoiseTag BCI that gives a novel spin on BCI technology. It is faster, more comfortable and efficient and easier to use than ever before. Learn more in our interview with Dr. Desain.
Former Tennessee Titans linebacker Tim Shaw’s unexpected diagnosis of ALS doesn’t stop him from finding hope and advocating on behalf of those faced with ALS. He has also been an incredible ally of The ALS Association in fighting this disease. Below, we’ve included a Q/A with Tim, which includes information about his new book, “Blitz Your Life.” The story, according to its author, is about “overcoming fear and living life with a purpose.”
After over a year in the making, the ALS Assistive Technology Challenge came to its culmination at the finale event during the ALS/MND International Alliance Meeting in Dublin. All five finalist teams came together to show off their prototypes to our esteemed judging team. The meeting participants living with ALS also had a chance to try out each new technology. Every finalist had an innovative idea – from brain computer interface technology to voice message banking – to help people living with ALS communicate with ease. This is extremely important to their quality of life and why the Challenge was started in the first place. Here is a photo summary of this exciting event, ending with the winners.
By Dr. Richard Bedlack
The CReATe Consortium is an ALS Association supported strategic initiative dedicated to the discovery and validation of ALS biomarkers and understanding the relationship between the clinical presentation and genetic background of people living with ALS. Biomarkers are essential for carrying out efficient ALS clinical trials and improving diagnosis time. Here, Dr. Bedlack, CReATe Outreach and Advocacy Director, shares how CReATe is making an impact on discovering effective treatments for motor neuron diseases that includes ALS.
In 2016, a significant number of ALS research discoveries, advances in clinical trials, collaborations and strategic initiatives all accelerated the pace of discovery in finding treatments and a cure for ALS.
We’ve pulled together what we think are 10 of 2016’s biggest advances in ALS research that gave us, and people living with ALS, hope this year!
Earlier this month, The ALS Association was happy to travel to Dublin to participate in the 27th International Symposium on ALS/MND. The Symposium, the largest ever, brought together top ALS researchers and clinicians from all over the world. People in attendance, including those from The ALS Association, used the hashtag #alssymp during the event. Here are some of our favorites!
After over a year in the making, The ALS Association in partnership with Prize4Life awarded the ALS Assistive Technology prize in Dublin during the ALS/MND International Alliance Meeting. We are thrilled to award one of the top prizes to Dexter Ang and David Cipoletta, two young entrepreneurs that founded Pison Technology based out of Massachusetts. They blew the judges away with their easy-to-use, self-contained communication system based on muscle EMG signals. People living with ALS are able to learn and use the system to communicate in minutes. We observed first hand as participants were thrilled with its comfort and usability while testing out their technology. We sat down with CEO Dexter Ang and CTO David Cipoletta to learn more about their company and their exciting new technology.
You may have heard that IBM’s supercomputer, Watson, competed on Jeopardy! and is now being used to solve everything from business problems to diagnosing cancer. Today, we were thrilled to hear the latest Watson news: Working with a team at the Barrow Neurological Institute in Phoenix, headed by Dr. Robert Bowser, Watson helped researchers discover 5 new ALS genes. The Barrow researchers are excited about Watson’s future potential for further neuroscience work, and so are we!
Watch IBM’s new video below, and read more about the announcement here.
By Mel Reichman, Ph.D.
Certain genetic changes in super oxide dismutase-1 (SOD1), the second most common form of inherited ALS, cause this protein composed of two parts (a dimer) to fall apart into individual pieces (monomers). These SOD1 monomers can abnormally clump together in motor neurons during ALS disease. Join me at The ALS Association December webinar to learn about my research to develop new ways to discover novel ALS drugs that stabilize SOD1 dimers. This includes a high-throughput screening technique, which could reveal unexpected, safe combinations of FDA-approved drugs to treat ALS.