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WASHINGTON, D.C. — Muscular dystrophy is one of the most common genetic disorders. One in every 3,500 baby boys is diagnosed with the condition. The most devastating type — Duchenne muscular dystrophy — slowly robs kids of their muscles, and they rarely live past age 20. Researchers say they’ve made...
Kim Morey knows everyone in town. It’s only natural — she’s lived in Bentonville all but her first year of life. Her friends tease that a lunch date doesn’t pass without Morey seeing a face she recognizes. But in those short, nice-to-see-you conversations, old friends probably can’t make out what’s...
Grateful parents are putting the national spotlight on a school for helping their daughter cope with a rare condition. James and Kerry Satelle have nominated Ysgol Glan Gele reception class teacher Laura Martin for the Welsh Teacher of the Year award for the work she did in allowing leukodystrophy sufferer...
A dundee schoolgirl due to have a life-changing operation will be surfing the world wide web from her hospital bed, thanks to some bingo players. Monique Murphy (9), who has a rare form of dwarfism, is due to have a nine-hour operation in September in an attempt to straighten bones...
RESEARCH TRIANGLE PARK, N.C. – BioCryst Pharmaceuticals, Inc. (Nasdaq:BCRX) today announced that the company has appointed Helen Thackray, M.D., FAAP, to the newly created position of chief research and development officer. In this role, Dr. Thackray will be responsible for continuing to build the company’s portfolio of rare disease medicines by...
MIAMI – Biorasi, a leading global full-service contract research organization (CRO), has announced the appointment of Jimmy El Hokayem, Ph.D., head of the company’s Neurology and Regenerative Medicine Center of Excellence to the Scientific Advisory Board (SAB) for the Foundation for Angelman Syndrome Therapeutics (FAST). In this role, Dr. El Hokayem...
MAKANDA – Blue Sky Vineyard will have food, music and auctions to raise awareness and funds for Tay-Sachs, a genetic neurological disease, from 10 a.m. to 7 p.m. Saturday. This will be the fourth year the winery will host the Tay-Sachs Benefit Concert in honor of 4-year-old Elise Rochman. To...
Little Evan Garcia slept soundly in his mother’s arms on Monday as his parents were introduced to the Aurora city employee whose anonymous bone marrow donation in 2007 saved his life. The Garcia family traveled from their Jasper, Texas, home this week to thank Mary Garza and help promote a...
GRAND RAPIDS, Mich. – Six-year-old Jacob Geer takes 12 pills every day to control his seizures, is fed by a tube and regularly visits a variety of doctors. He will be lucky to celebrate his 12th birthday. One year ago, Jacob was diagnosed with Batten disease, a genetic disorder of...
A brave baby who recently had both kidneys removed was left fighting for life after developing a serious chest infection. Twenty-month-old Ella Chadwick underwent the radical surgery in April as her only hope of survival against the rare Congenital Nephrotic Syndrome, a potentially fatal disorder that affects one in 10,000...