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.
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.
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.
When first diagnosed with ALS, one of the first questions people ask is whether it is OK to continue exercising. A recently completed ALS Association funded study by Dr. Nicholas Maragakis of Johns Hopkins University and team set out to help answer this common question by exploring the possible benefits of exercise for people living with ALS. They found that stretching, resistance, and endurance exercise are all safe and tolerable to perform with a specified program. Exercise did not worsen outcomes related to ALS disease. The article was published in journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.
This year’s annual Society for Neuroscience (SfN) Meeting in Washington, D.C., was a huge gathering of over 30,000 attendees from 80 countries all dedicated to advancing neuroscience. The ALS Association was one of 534 exhibitors and promoted our global TREAT ALS research program. We met people and answer their questions about ALS. Multiple presentation sessions and posters were dedicated to ALS and many of our funded researchers attended to present and discuss their latest findings. Here are some highlights of the many top ALS scientists that we fund who generously shared with us the progress they have recently made.