In preparation for this week’s ALS Association Advocacy Fly-In in Washington D.C., we are giving a preview of our 2017 legislative priorities. Here we focus on the ALS Disability Insurance Access Act, which was introduced last week in the Senate and United States House of Representatives (S.379/H.R.1171). Its goal is to eliminate the five-month waiting period that people living with ALS must complete prior to receiving Social Security Disability Insurance (SSDI). The Association whole-heartedly supports this legislation and its goals and is acting aggressively to make this legislation into a reality.
ALS is characterized by the progressive loss of motor neurons – both upper motor neurons (UMNs) and lower motor neurons (LMNs). Within the ALS scientific community there has been a debate how UMNs and LMNs contribute to disease. Dr. Ozdinler and team from Northwestern University’s Feinberg School of Medicine in Chicago recently published a paper in Scientific Reports, a high impact journal published by Nature, further solidifying the important contribution of UMNs to disease specifically in people living with ALS. The ALS Association is pleased to support Dr. Ozdinler’s studies that contributed to this important paper.
In January, CEO and President Barb Newhouse hosted a Listening Tour with Association staff leaders, BOT Chairman Doug Butcher and Bill Thoet, former BOT Chairman and current Chairman of The Association’s Research Committee.
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.
During The ALS Association’s annual Leadership Conference in Irvine, Calif., The Association came together to honor the Barnett family, who have contributed over $11 million to The ALS Association since it was founded. Lawrence Barnett was the founding chairman of The Association. To solidify the family’s place in Association history, it was announced that the TREAT ALSTM drug development program will be named “The Lawrence and Isabel Barnett Drug Development Program.”
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.
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.”