Last night, WCVB, the Boston ABC affiliate, featured a half-hour show called “Unlocking ALS,” highlighting all the great work coming out of the Boston area in the fight against ALS. The show did a wonderful job covering all the progress that has occurred since the ALS Ice Bucket Challenge (ALS IBC), an organic online movement that catapulted ALS into the spotlight while raising $220 million worldwide. From the ALS IBC, The ALS Association received $115 million dollars, of which over $77 million has been dedicated to research. Peter Frates and his family were and continue to be instrumental in advancing this important movement.
The story highlighted some outstanding successes in research that The Association funds in the Boston area. This includes the discovery of a new gene, NEK1, out of the international collaboration Project MinE. Dr. John Landers at the University of Massachusetts Medical School in Worcester, Mass. and colleagues led the way to this important first step towards developing novel therapeutics targeting NEK1. Research out of the ALS Therapy Development Institute (ALS TDI) that The Association supports was also highlighted. A research initiative, ALS ONE, based in Boston works to promote collaboration and sharing of ALS research.
The exciting advances in assistive technology were also showcased. The leaders of Pison Technology, Dexter Ang and David Cipoletta with the help of ALS hero and advocate Bobby Forster, demoed their award winning wearable sensors that capture the smallest muscle movement that is translated to a computer help people living with ALS communicate with ease. Dexter, CEO of Pison Technology, was a winner of our ALS Assistive Technology Challenge last December. He founded his company in honor of his mother who passed away from ALS and named the company after his mother’s cat Pison who gave her comfort while she was sick.
The importance of participating in ALS clinical trials was emphasized by Stephen Winthrop, member of The Association’s National Board of Trustees, who also gave a tour of his home that is full of advanced technology focused on maintaining mobility, accessibility and safety. Current clinical trials that have recently reported promising results were also highlighted, such as Edaravone and stem cell trials out of BrainStorm Cell Therapeutics. Dr. Merit Cudkowicz, Chief of Neurology at Massachusetts General Hospital, expressed hope with the large amount of researchers working on ALS that have achieved promising results.
Important advocacy efforts have also stemmed for the ALS IBC. Seth Moulton, a Congressman representing Pete Frates’ district in Mass., has been instrumental in speeding up disability benefits for ALS patients. He is co-sponsoring the ALS Disability Insurance Access Act, which waives the five-month waiting period for Social Security Disability Insurance (SSDI).
The takeaway from the story was that major funds are still needed to support ALS research. It is extremely expensive to take an idea along the research and drug development pipeline to achieve effective treatments and ultimately a cure for ALS. Let’s keep the momentum from the ALS Ice Bucket Challenge going!
Watch the show here!