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Amyotrophic lateral sclerosis, commonly called ALS or Lou Gehrig’s disease, is a devastating, degenerative neurological disorder. Its cruelties include robbing patients of activities we often take for granted, like walking, eating, talking, and even breathing. But a new tech initiative could help restore ALS patients’ most personal attributes: Their very voices.
On Thursday, the ALS Association announced it was launching “Project Revoice.” Under the effort, ALS patients can record their voices while they still can in a process called “voice banking”—a protective measure so that they may still speak in their own voices, through a computer, long after their disease has eaten away at that ability. (Recently deceased physicist Stephen Hawking famously spoke through a digitized voice with a computer that detected slight twitches in his facial muscles and translated them into speech.)
The project’s launch featured a prominent ALS patient and research advocate: Pat Quinn, co-founder of the ALS Ice Bucket Challenge, an initially-derided social media stunt that went on to raise hundreds of millions of dollars for ALS research and may have spurred important new discoveries about the disease’s genetic roots. Quinn lost his own voice long ago—but Project Revoice recreated it for him.
“Pat did not record (or bank) his voice before ALS robbed him of his ability to speak, but using footage from his many Ice Bucket Challenge interviews, Project Revoice was able to clone his voice,” the group said. “This takes speech tech to a whole new level and means everything to how I communicate,” added Quinn himself, who also used the tech to speak to friends and family with his own voice. “I really didn’t like to hear my old computer voice, so I often avoided getting involved in conversations.”
Read on for the day’s news.
DIGITAL HEALTH
St. Jude, Microsoft, DNAnexus launch cloud platform for child cancer research. St. Jude Children's Research Hospital is launching a cloud platform (the appropriately named St. Jude Cloud) in a partnership with tech giant Microsoft and DNAnexus. The goal? Letting researchers access a massive genomics data repository in an effort to spur pediatric cancer treatments.
INDICATIONS
FDA launches rare criminal investigation into herpes vaccine research. Kaiser Health News reports that the Food and Drug Administration (FDA) is taking an unusual, and significant, step as it launches a criminal investigation into Southern Illinois University (SIU) professor accused of injecting people with an unauthorized experimental herpes vaccine. The professor, William Halford, died in June, according to KHN. Authorities are reportedly looking into SIU and Walford's former company on the matter. (Kaiser Health News)
A $300 hepatitis C cure? A mid-to-late-stage clinical trial finds that a nonprofit's new hepatitis C drug is on par with far more expensive alternatives on the market—and could save hep C patients in developing countries a significant amount of money. If the Drugs for Neglected Diseases Initiative (DNDi) and its partners can continue to post these kinds of results (96% to 97% cure rates), the treatment could be available in some countries for as little as $300 for a full course of treatment. (Fortune)
THE BIG PICTURE
First opioid trial scheduled for 2019 in Ohio. Cities, states, and the federal government are all teaming up against opioid drug manufacturers as the addiction crisis rages in the U.S. On Wednesday, a federal judge set the date for the first case on that level: March 18, 2019, in Cleveland, Ohio—a combined trial for three lawsuits filed by Northeast Ohio governments. (Cleveland.com)
REQUIRED READING
A Paralyzed Man Can Feel Natural Sensations Again in a Scientific First, by Jamie Ducharme
Survey: Roughly 1 in 10 Americans Say They've Deleted Facebook, by Chris Morris
Uber CEO Dara Khosrowshahi on Customers' Personal Data: 'We Don't Try to Monetize It', by Rachel King
A Cord Cutter's Life for Me: Replacing Cable With Internet TV, by Aaron Pressman
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