In late-February 2017, The ALS Association announced the release of 11 new Living with ALS resource guides on our website, www.alsa.org. The guides were designed to inform and educate people about ALS in a comprehensive and easily understood format, addressing many of the common concerns and issues that face people living with ALS. They can be found in electronic format HERE.
We are also pleased to announce that several new educational resources are now available to view and download from our website, including: Families and ALS: A Guide for Talking with and Supporting Children and Youths and the Medical Information Packet and Key Medical Information Card.
Many of us here at The ALS Association are enormous fans of SpongeBob SquarePants. It has brought joy to millions of children – and adults – for a long time. So we were saddened to learn that SpongeBob creator Stephen Hillenburg has ALS, as he said in a statement to Variety. Here’s his statement:
“I wanted people to hear directly from me that I have been diagnosed with ALS. Anyone who knows me knows that I will continue to work on ‘SpongeBob SquarePants’ and my other passions for as long as I am able. My family and I are grateful for the outpouring of love and support. We ask that our sincere request for privacy be honored during this time.”
You can read the Variety article here.
Our thoughts are with Stephen and his family. We are glad that SpongeBob will go on and look forward to someday finding out the secret formula in Krusty Krab’s delicious Krabby Patties…
The Association is pleased to continue on the tradition of supporting bright, young scientists in ALS research through the Milton Safenowitz Postdoctoral Fellowship Program. This year, we are supporting six new postdoctoral fellows out of a highly competitive applicant pool. In this series, we highlight the dedication and unique contribution each fellow makes to ALS research. Today, we feature Dr. Sergey Stavisky from Stanford University
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.