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.
Rivals Honor former ODU Coach Jeff Capel, Jr., Recently Diagnosed with ALS
The men’s basketball coaching staffs of Duke University and the University of North Carolina are wearing ALS Association lapel pins tonight in honor of Jeff Capel, Jr., who was recently diagnosed with ALS. Capel was the head coach at Old Dominion University for seven seasons and also served as an assistant for the Charlotte Bobcats and the Philadelphia 76ers. His son, Jeff, is an assistant on Duke’s staff, and his son, Jason, played at UNC and now is an announcer on the ACC Network.
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.