Dr. Steven Finkbeiner of the Gladstone Institutes recently announced a research partnership with Eli Lilly and Company to move his ALS research forward. Dr. Finkbeiner is a member of California-based Neuro Collaborative, an ALS Association-funded initiative focused on discovering new ALS therapeutics and moving them into clinical trials. This multi-year, milestone-driven project is using innovative robotic microscope technology to focus on better understanding neurodegenerative diseases, with a large focus on ALS.
Your life can change in an instant. Carmen Berkley’s life did in 2015. She is one of the 6,000 people diagnosed with ALS each year. In the video below, Carmen shares with us what a visit to an ALS clinic is like for someone living with the disease.
Before diagnosis, Carmen kept busy as a unit secretary on the oncology floor at Barnes-Jewish Hospital in St. Louis and took care of her elderly father. Now, her husband Charles and two daughters, Jamia and Camille, take care of her.
Youth who help care for their loved ones with ALS are learning about important areas of ALS care – from physical therapy, occupational therapy, and speech therapy, to social work and neurology — through YCare, an education and support program developed and directed by Dr. Melinda S. Kavanaugh, Assistant Professor of Social Work with the Helen Bader School of Social Welfare at the University of Wisconsin-Milwaukee.
People living with ALS eventually lose the ability to speak to their loved ones and friends. In partnership with Prize4Life, we initiated the ALS Assistive Technology Challenge to improve the lives of people with ALS. The Challenge culminated last December in Dublin during the ALS/MND International Alliance Meeting, when we brought together five top assistive technology teams to find the best prototype designed to help people living with ALS communicate with ease. The key prize criteria were that the technology is adaptable to the changing phases of the disease and the teams had a solid business plan to bring the technology to market in a reasonable time frame. Importantly, people with ALS were engaged in the development and review of the Challenge.
At the end of the day, there were two winners – Dr. Peter Desain and team of The Donders Institute for Brain, Cognition, and Behavior in the Netherlands and Dexter Ang and team of Pison Technology at Massachusetts Institute of Technology. We recently sat down with the two winners to learn about the progress they made in the past year.
ALS is a severely debilitating disease that takes away a person’s ability to move, speak, swallow, and eventually breath. There is much to be accomplished to immediately enhance their quality of life. With this in mind, we sponsored an ALS Hackathon in partnership with Prize4Life to bring together bright, young students to brainstorm and quickly develop an assistive technology prototype. This past October, over 70 students attended the Hackathon, from Massachusetts Institute of Technology (MIT), Harvard, and Northeastern University. They worked closely with people living with ALS, technology experts, and clinicians to come up with unique ideas. They moved fast, over only a 24-hour time period, and at the end came up with some exciting ideas to help people with ALS in a variety of ways.
People with ALS come first in everything we do. The ALS Association is dedicated to providing those fighting ALS, their families, and friends with the critical information, support, and resources necessary to live a full life and better meet daily challenges.
Our chapters assist people living with ALS and their families in our community through our equipment loan closets, support groups, augmentative communication and assistive technology program, caregiver support, and education and outreach. We also collaborate with the best ALS physicians and clinics in our service area to help ensure that people living with ALS have access to specialized care, based on best practices.
Dr. Don Cleveland of University of California, San Diego received the 2018 Breakthrough Prize in Life Sciences, an eminent honor to our long-time-funded ALS researcher. He received a $3 million prize, the largest individual monetary prize in science, during “The Oscars of Science” gala in Silicon Valley hosted by Morgan Freeman and aired on the National Geographic channel. He will use the Prize to continue his vital ALS research projects. The Prize was founded in 2013 and honors “transformative advances towards understanding living systems and extending human life,” according to officials. Notable individuals sponsor the Prize, including Priscilla and Mark Zuckerberg, Sergey Bin, Pony Ma, Yuri and Julia Milner, and Anne Wojcicki.