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.
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.
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.
The ALS Association is pleased to share the results of the 2016 Care Services Community Survey. Below we offer some background on the survey and highlight a few significant responses. We also provide information on how you can give additional feedback on The Association’s programs in September.
In July 2016, The ALS Association invited members of the ALS community (defined as people living with ALS, family members, and caregivers) to participate in a community care services survey. This survey included 15 questions and was shared via several of The Association’s communication channels. Nearly 800 members of the community responded.
Providing multiple opportunities for people living with ALS to comment on our work is vital, and the insights gained from this survey will be combined with the results of our ongoing series of Listening Tour meetings with the ALS community. We will use all of this information to inform strategic planning, help identify and prioritize program initiatives, focus on potential program improvements, and contribute data and information for advanced decision-making.
When asked what programs they have accessed through local ALS Association chapters, 52 percent responded that they have utilized an equipment loan closet. Forty percent visited a certified center or recognized clinic, 34 percent accessed a support program, and 31 percent received an education service from their chapter.
When asked which areas The Association should be devoting more care services resources to, more than half of respondents chose assistive technology (58 percent) and home health benefits (52 percent). Thirty-nine percent chose programs that support increased access to care and services, while 36 percent wanted more resources related to Medicare, Medicaid, and veterans insurance programs.
Thirteen percent of respondents also indicated that finances, costs, and/or insurances make up the greatest challenge that they and their family face. Other significant challenges include accessing home health benefits (10 percent) and equipment loans (nine percent).
For more information about the survey, including responses for all questions, read the full report.
Another Opportunity for Feedback
Did you miss the chance to take the Care Services survey? We’re providing another opportunity for the ALS community to give feedback during our second “virtual listening tour” on September 27, 2016 from 1-3 p.m. EDT. Register here!
Barbara Dickinson, whose husband, Brian, lived with ALS for nine years, shared her thoughts and feelings about having a loved one with ALS. Barbara is a former national trustee of The ALS Association and president emeritus of The ALS Association’s Rhode Island Chapter. Our thanks and gratitude go to Barbara for agreeing to let us put her words on our web site.
The ALS Association’s goal in sharing this information here is, through Barbara’s story to 1) show how one family was able to successfully negotiate with their HMO for in-home care payments, and 2) share experiences of caregiving and effective coping strategies – validation of common feelings.
It should be emphasized that this tells the experiences of one individual at a certain time in her life. Certainly, not all people will have the same situations and experiences that Barbara shares and not everyone will and/or would develop the same opinions that Barbara has.
Excerpts from Barbara Dickinson’s messages
“My name is Barbara Dickinson. I’m the trustee of The ALS Association Rhode Island Chapter and also a national trustee of The ALS Association. I got involved with ALS because my husband was diagnosed nine years ago with the disease. We made some decisions in the course of his disease that has allowed him to have a quality of life that I would hope more patients with ALS would be able to achieve, and that’s what I want to talk to you about today.