Hosts Lisa Pecoraro Deegan and McFinn Lovere Interview Top Researchers, Clinicians, Patients, and Caregivers for an Inside Look at ALS
October 21, 2021 (Silicon Valley, CA) – For an inside look at how ALS impacts patients and their caregivers as well as the innovations that researchers and clinicians are coming up with to find biomarkers, treatments, and cures for this life-threatening disease, start listening to the EverythingALS podcast, “Stories and Innovation in ALS.”
EverythingALS (EALS) was founded in 2020 to help discover biomarkers – which are nonexistent -- and document the progression of ALS by launching the world’s largest speech study with more than 600 participants. The California nonprofit teamed up with Modality.ai, which has developed AI technology to remotely spot biomarkers and assess progression of ALS through speech and facial gestures using a virtual agent, or avatar.
Hosted by EALS team members Lisa Pecoraro and McFinn Lovere, the podcast starts off with a bang: an interview with another EALS team member, Richard Sperry, a former executive at Novo Nordisk, who was misdiagnosed with ALS and started preparing for his demise. It wasn’t until he underwent a third test at the Mayo Clinic that he was told he had been misdiagnosed and instead had an entirely treatable neurological disease.
In another team interview with CEO and cofounder of EALS Indu Navar, she talks about what gave her the inspiration to start this venture. A successful high-tech entrepreneur, Navar was married to Peter Cohen, an executive at Amazon, who came down with a highly progressive form ALS in 2018 but who wasn’t diagnosed for more than a year. As a result, when he passed away in 2019, Navar was determined to use her skills, experience, and connections in high tech to take the Silicon Valley approach to biomarker discovery and basically “reinvent the research platform.” Listeners will be amazed by her journey, which has resulted in rapidly recruiting patients, partnering with pharma, and collaborating with leading medical and research institutions.
Another popular podcast hosted by the duo of Lisa and McFinn is with the “ALS reversal researcher,
”Dr. Richard Bedlack, neurology professor at Duke University. Dr. Bedlack has documented and analyzed 52 cases of ALS reversal – one of which includes McFinn – and relates some of his findings. On a personal level, he explains why he dresses up in unconventional clothing to make his patients feel better when he often has to deliver grim news. He also is trying to raise millions of dollars for an endowed chair in ALS at Duke, so he can work full time on helping to find a cure.
Caretaker Neil Olson, also an EALS team member, talks about the time and effort required to find resources for his father, who came down with ALS at age 60. He spent hours searching the Internet for medical and other support, such as finding the right wheelchair to get his father transported into a van for hospital visits. Neil talks about using his technical skills and ALS caretaking experience to build an ALS dashboard to help patients and their caregivers, as well as their clinicians, track progression of the disease.
In the coming months, expect to hear more informative and uplifting podcasts and stories from ALS researchers, doctors, EALS team members, and patients themselves.
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