In 2013 he started Target ALS, a nonprofit research foundation trying to accelerate the development of treatments for the usually fatal degenerative neurological disorder. The former investment banker also donated $10 million of his personal fortune to the New York-based foundation. Target ALS holds its annual meeting Tuesday through Thursday at the Charles Hotel in Cambridge. Executives from more than 90 drug companies and venture capital firms are expected to attend the gathering, where Doctoroff is expected to unveil an ambitious five-year, $100 million strategy to take on the disease. The plan includes earmarking $30 million to identify validated biological markers that could be used to diagnose ALS early, monitor how it progresses, and gauge whether a drug works. The lack of identifiable biomarkers has been among the many challenges for researchers. Doctoroff also plans to discuss progress researchers have made with funding from his group. Within six months, for example, the … [Read more...] about For Dan Doctoroff, funding ALS research is a family matter
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Joey Tanella is a typical 8-year-old boy, having fun with his sister and parents. But he's among the millions of people in the United States living with a rare disease — in Joey's case, diagnosed at just two days old. "The doctor called me and said we had to bring Joey immediately to the hospital," his mother, Tara Tanella, told CBS News. "We had to immediately stop feeding him. During those days, his organs were failing, essentially. His liver was failing."Joey has galactosemia, which occurs in about 1 in 50,000 births. The rare genetic metabolic disorder is life-threatening. It interferes with the body's ability to process a sugar called galactose, and the only treatment is to avoid foods that contain galactose or lactose, found in all dairy products.All babies born in the U.S. are now screened for galactosemia. But Dr. Gerard Berry at Boston Children's Hospital says even with early diagnosis and a restricted diet, children with this condition can still suffer speech and … [Read more...] about “Like a blindfolded walk in the dark:” Families share struggle with kids’ rare diseases
At age 37, Hope Hartman developed a painful, burning rash in her right ear, in the part “you would clean with a Q-tip,” the Denver resident says. The pain got so bad she went to a local emergency room, where the staff was flummoxed. Hartman was admitted to the hospital, where she started to lose sensation on the right side of her face.During that 2013 health crisis, Hartman’s husband, Mike, sent a picture of the ear to his mom, a nurse. She said it looked like zoster, better known as shingles, which is caused by the varicella zoster virus. She “diagnosed it from an iPhone photo,” Hartman recalls.Antiviral treatment didn’t fully clear the infection. For about two weeks after her release from the hospital, Hartman coped with severe pain, hearing loss and difficulty eating. Her right eye wouldn’t fully open or close. Following an appointment with neurologist Maria Nagel of the University of Colorado School of Medicine in Aurora, Hartman was … [Read more...] about With its burning grip, shingles can do lasting damage
PUBLISHED: 09:56 13 January 2019 | UPDATED: 22:45 13 January 2019 Karen Bethell Rhianwen Smee, who has signed up for a 48-mile 'ultra' marathon to raise cash to support people with eating disorders. Photo: KAREN BETHELL Archant When Rhianwen Smee signed up for a gruelling, 48-mile ‘ultra’ marathon to raise cash for the eating disorders charity Beat, she opened up to friends and family for the first time about her own struggles with food. The Holt mum-of-four, who has already topped her £400 fundraising target, talks to KAREN BETHELL about her lifelong battle with binge eating disorder. Rhianwen Smee, who has signed up for a 48-mile 'ultra' marathon to raise cash to support people with eating disorders. Photo: KAREN BETHELLBecause her mother had severe mental health problems, after her parents separated, Rhianwen and her two sisters were brought up by their father at Kelling, near Holt.With her mother frequently admitted to hospital, life … [Read more...] about “There is help out there and it can change everything.” Mum-of-four speaks about her battle with binge eating disorder
Five big thinkers — Regina Barzilay, George Church, Jennifer Egan, Catherine Mohr and Siddhartha Mukherjee — puzzle over the future of the future. NOV. 16, 2018 The Tech And Design Issue From Gene Editing to A.I., How Will Technology Transform Humanity? The Future of Aging Just Might Be in Margaritaville Proteomics Might Have Saved My Mother’s Life. And It May Yet Save Mine. The Human Brain Is a Time Traveler On Instagram, Seeing Between the (Gender) Lines May A.I. Help You? 20 Americans Die Each Day Waiting for Organs. Can Pigs Save Them? The ‘Geno-Economists’ Say DNA Can Predict Our Chances of Success Gaming Out a Chance at Motherhood — Later Data-Driven Medicine Will Help People — But Can It Do So Equally? Climate Change and the Savage Human Future Jokes From the Future Group 3 Created with Sketch. Group 3 Created with … [Read more...] about From Gene Editing to A.I., How Will Technology Transform Humanity?