A teenager from North Somerset with a life-threatening illness is meeting the Prime Minister to ask him for more help in funding research into his condition. Matthew Barrett, 13, suffers from Duchenne Muscular Dystrophy – a muscle-wasting disease in men which cuts life expectancy to about 20 to 25 years....
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SOUTH SAN FRANCISCO, Calif. – Tenaya Therapeutics, a biotechnology company with a mission to discover, develop and deliver curative therapies that address the underlying causes of heart disease, today announced the hires of Leone Patterson, MBA, as Chief Financial and Business Officer and Matthew Pollman, MD, MS, as Senior Vice...
GRAND RAPIDS, Mich. – Tetra Therapeutics, a clinical stage biopharmaceutical company focused on the development of compounds for the treatment of brain disorders associated with cognitive and memory deficits, notably BPN14770, a selective inhibitor of phosphodiesterase‐4D (PDE4D), announced changes to its executive team as the company marks one year since...
THE WOODLANDS, Texas — Ollie Rasberry has Metachromatic leukodystrophy (MLD), a rare and fatal disease. His big sister, Addi, has it, too. She is 5 years old, and the disease has already progressed rapidly in her. Life expectancy for a child living with their form of MLD is between 5...
LOS ANGELES – 54 honorees representing 23 states participated in the 2022 Donate Life Rose Parade® float, “Courage to Hope.” With ages ranging from 16 to 71 years old for riders and walkers, and from 9 days old, to 55 years old for floragraph honorees, these participants and their families...
BRONX NY — Neurologists often diagnose Alzheimer’s disease after evaluating patients during lengthy, in-person office visits. This poses a significant challenge for many groups, particularly people with limited access to specialized care, including people from historically marginalized groups and people living in rural areas. Albert Einstein College of Medicine has...
CHICAGO, Illinois – The American Society for Transplantation and Cellular Therapy® (ASTCT®) supports the decision by the U.S. Food and Drug Administration’s (FDA) to grant multiple myeloma patients earlier access to CAR T-cell therapy Abecma as a second-line treatment and the CAR T therapy Carvykti as a third-line treatment. The...
BOSTON, Mass. — The Barth Syndrome Foundation (BSF), the only patient advocacy organization dedicated to Barth syndrome and saving lives around the world through education, advances in treatment and finding a cure, today announced that it is petitioning the U.S. Food and Drug Administration (FDA) to review the New Drug...
Boston — The Barth Syndrome Foundation (BSF), the only patient advocacy organization dedicated to Barth syndrome and saving lives around the world through education, advances in treatment and finding a cure, recognizes the first annual Barth Syndrome Awareness Day. Barth syndrome is an ultra-rare, life-threatening, genetic disease primarily affecting males....
Boston — The Barth Syndrome Foundation (BSF), the only patient advocacy organization dedicated to Barth syndrome and saving lives around the world through education, advances in treatment and finding a cure, recognizes the first annual Barth Syndrome Awareness Day. Barth syndrome is an ultra-rare, life-threatening, genetic disease primarily affecting males....