Research
Two neuroscience rock stars elected to the National Academy of Medicine
Beth Stevens, PhD, and Elizabeth Engle, MD, are the latest Boston Children’s Hospital researchers to be elected to the prestigious National Academy of Medicine. Their election, together with Daphne Haas-Kogan, MD, brings Boston Children’s total number of current NAM members to 22. Both scientists hail from the F.M. Kirby Neurobiology Center at Boston Children’s and are ... Read More about Two neuroscience rock stars elected to the National Academy of Medicine
Clinical Care
Most parents of children with advanced cancer don’t recognize their low chance of cure
End-of-life care for children with advanced cancer is often very intensive, and can cause much suffering. When parents recognize that a cure is unlikely, they often choose to spare their children from aggressive treatments and focus on the quality of their child’s remaining time. But a study published Oct. 4 in the journal Cancer finds ... Read More about Most parents of children with advanced cancer don’t recognize their low chance of cure
Patient Stories
Interventional pain techniques bring Sadie relief
It’s hard for Sadie Doherty and her parents to remember a time when she hasn’t been in pain. Now 17, she had gastrointestinal problems “right off the bat,” says her father, Mike. Testing at Boston Children’s Hospital eventually revealed the presence of eosinophils — white blood cells that can indicate an allergic reaction — in ... Read More about Interventional pain techniques bring Sadie relief
Health and Parenting
Get answers about your child’s chronic pain
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Patient Stories
Sofie’s story: A new gene therapy treatment for SMA
Sofie Petrovická sits up in the exam room, smiling and laughing with her physical therapist, Elizabeth Maczek. Though she’s just over a year old, sitting on her own is no minor feat for Sofie — in fact, it’s nothing short of a miracle. Sofie was just 3 months old when she was diagnosed with spinal ... Read More about Sofie’s story: A new gene therapy treatment for SMA
Patient Stories
How families are reshaping Shwachman-Diamond syndrome research
No one knew the heartache about to unfold when Savannah and Brett Lillywhite first began thinking about having a family 10 years ago. The Lillywhites Savannah and Brett are both the unlikely carriers of a rare condition called Shwachman-Diamond syndrome — SDS for short — a blood disorder that can lead to bone marrow failure ... Read More about How families are reshaping Shwachman-Diamond syndrome research
Patient Stories
Teen cancer survivor rediscovers her confidence with prosthesis
At just 18 years old, Gabbi Stewart is a two-time survivor of two very different types of cancer. While her care team acted quickly to aggressively treat her most recent cancer, Stewart was faced with what she says was her greatest challenge: building back the self-confidence that the disease had eroded. A rare diagnosis In ... Read More about Teen cancer survivor rediscovers her confidence with prosthesis
Clinical Care
Racial differences in response to asthma therapies, and other AsthmaNet lessons
African Americans have higher rates of serious asthma attacks, hospitalizations, and asthma-related deaths than whites. Now, a large multicenter study of African Americans with poorly controlled asthma finds that one size doesn’t fit all when it comes to common asthma treatments. Results appear in The New England Journal of Medicine (NEJM). The randomized study had ... Read More about Racial differences in response to asthma therapies, and other AsthmaNet lessons
Patient Stories
Ellery’s story: The mystery of opsoclonus myoclonus syndrome
Ellery was a normally developing 2-year-old when her skills took a dramatic shift backwards last winter. “She started wobbling when she walked, like someone who had had a few beers,” says her mom, Maura. “Then she developed tremors in her hands, couldn’t put a spoon to her mouth and she stopped playing with any of ... Read More about Ellery’s story: The mystery of opsoclonus myoclonus syndrome
Health and Parenting
How our children’s rare conditions created our special bond
Twenty years ago, Brad McNamara and Joel Klein became roommates at Northeastern University. Little did they know that years later their friendship would become a vital source of support for themselves and their families, connected by the bond of parenting a child with a rare condition. The families’ medical odyssey began in 2014, when Joel ... Read More about How our children’s rare conditions created our special bond