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.”
Continue reading Blitz Your Life
After over a year in the making, the ALS Assistive Technology Challenge came to its culmination at the finale event during the ALS/MND International Alliance Meeting in Dublin. All five finalist teams came together to show off their prototypes to our esteemed judging team. The meeting participants living with ALS also had a chance to try out each new technology. Every finalist had an innovative idea – from brain computer interface technology to voice message banking – to help people living with ALS communicate with ease. This is extremely important to their quality of life and why the Challenge was started in the first place. Here is a photo summary of this exciting event, ending with the winners.
By Dr. Richard Bedlack
The CReATe Consortium is an ALS Association supported strategic initiative dedicated to the discovery and validation of ALS biomarkers and understanding the relationship between the clinical presentation and genetic background of people living with ALS. Biomarkers are essential for carrying out efficient ALS clinical trials and improving diagnosis time. Here, Dr. Bedlack, CReATe Outreach and Advocacy Director, shares how CReATe is making an impact on discovering effective treatments for motor neuron diseases that includes ALS.