ALS Organizations Launch Challenge To Improve Patients’ Communication

Two non-profit organizations, ALS Association and Prize4Life, have joined forces to launch a new challenge grant program called The ALS Assistive Technology Challenge. Inaugurated with an initial investment of close to $500,000, the new program intends to support research projects focused on new communication technology solutions for patients who suffer from amyotrophic lateral sclerosis (ALS).

ALS , a progressive neurological disease, affects the nerve cells in the brain and spinal cord called neurons, affecting the movement, muscle control and eventually causing paralysis and death. Throughout this process, for which there is currently no cure, patients loose their speech and capacity to communicate, one of the unmet needs related to the disease that if solved, could increase patients’ quality of life.

Due to the lack of resources, patients often lose their means of communication, becoming locked inside their bodies, a problem that the organizations wants to address. “This innovative challenge grant program will provide funds for the research and development of novel approaches to solving one of the most pressing needs of people with ALS—the ability to maintain their ability to communicate as the disease progresses,” explained the chief scientist for The ALS Association Lucie Bruijn, PhD, MBA, as the organization launched the program.

During the first phase of the program, The ALS Association and Prize4Life will attribute $50,000 worth of grants to groups working on functional prototypes of novel communication systems, which are easy to use, adapted to the altering needs of patients struggling with ALS and have the possibility to scale-up for widespread use. In addition, there will also be a second phase consisting on a competition for a $400,000 final prize that will be granted to the group with the most promising technology.

The final award will be given according to the opinion of ALS patients and will be used to develop the system. The idea for the challenge resulted from a workshop organized by The ALS Association and Prize4Life, which gathered key opinion leaders in the field of technology for ALS and patient representatives. During the event, the participants analyzed unmet needs for ALS patients, reviewed promising technological solutions, concluding that continued ability to communicate is one of the priorities to improve patients’ quality of life.

Despite the fact that there are assistive communication systems, the organizations believe they don’t completely fulfill ALS patients’ needs. “The name ‘assistive technology’ is misleading in the context of ALS,” noted Neta Zach, Ph.D., M.P.A., Chief Scientific Officer of Prize4Life. “For patients with ALS who struggle with communication or are completely unable to communicate in any other way, technology has the potential to be not just assistive, but transformative.”

“The rapid growth in technological solutions for communication (touchscreens, hands-free devices, and more) demonstrates that there is a vast technological potential, in both industry and academia, awaiting to be harnessed for the betterment of the lives of ALS patients. This challenge aims to connect these improvements with the needs of ALS patients for the first time,” she added.

Research teams can send letters of intent and abstracts to submit proposals for Phase 1 funding until November 9, 2015. The Challenge Committee will issue requests for full proposals to the groups with the most promising proposals on December 14, 2015. Full proposals will be due January 15, 2016, with winners announced on March 1. Prototype review will take place in the fall of 2016, and the winner of Phase 2 funding will be announced in November 2016. More information is available here.