The ALS Association’s annual Leadership Conference earlier this month brought together leaders from all 39 chapters across the country in Irvine, Calif., to share ideas and collaborate. At this year’s conference, we were pleased to honor several heroes who are living with ALS and who have provided great inspiration to all those around them.
In the January 9th 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.
Over the last year and a half, The ALS Association has been working with authors from Association Chapters, ALS centers and clinics and other ALS organizations to rewrite the original Living with ALS manual series, adding new and relevant content. The series has been developed for people living with ALS, family members, caregivers and other healthcare professionals, as well as our chapter and national staff.
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.
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.
Continue reading Two Young Entrepreneurs Win Part of the ALS Assistive Technology Challenge
The ALS Association, in partnership with ALS Finding a Cure and the Northeast ALS Consortium (NEALS) is giving $1 million in total funding to support a new ALS clinical trial to test the efficacy of the experimental drug RNS60 in reducing inflammation that may slow the disease process. The Association is contributing $500,000 out of the total award. The trial is currently being setup and is slated to begin in the New Year. The study will be led by Drs. Ettore Beghi, at the IRCCS Mario Negri Institute for Pharmacological Research in Milan, Letizia Mazzini, at the University Hospital of Novara in Novar, Italy and Sabrina Paganoni, at Massachusetts General Hospital in Boston.