Archive for epilepsy
Made-to-order therapies get a boost with new FDA guidelines
Ed. note: Mila passed away in February, 2021, at age 10. The Mila’s Miracle Foundation continues to work to pave a pathway for personalized treatments. Science-based treatments for rare genetic diseases have burgeoned in the past decade. That includes diseases so rare they affect just a handful of patients — or in some cases, just ... Read More
Fighting for answers: Innovative approach to epilepsy helps Emma thrive
As a nurse, Lynda Coto was used to solving problems — until she was faced with her own daughter’s seemingly inexplicable illness. “I always have answers, and if I don’t, I find them,” she says. “But this time, I just didn’t know.” The questions surrounding Emma’s health began almost as soon as she was born. At ... Read More
‘Anything is possible’: The sky’s the limit for teen with cerebral palsy
Jack Goldberg is on a mission. “I want other kids to see that if you work hard and put your mind to something, anything can be possible,” he says. “The sky’s the limit.” He should know. At 13, he competed in the National Finals to become one of Canada’s top-ranked pony jumpers in his division. ... Read More
Going into science: Women scientists at Boston Children’s offer advice to girls
In honor of the International Day of Women and Girls in Science (February 11), we invited women scientists at all stages of their careers at Boston Children’s Hospital to share their scientific agendas. Here is some of what they had to say. The scientists also offered their advice for girls interested in entering the field. ... Read More
My journey from patient to employee
When I was 13 years old, I remember eating my breakfast and next thing I knew, my mom was repeatedly asking me why I wasn’t responding to her. I was having my first seizure. The start of my journey This was the beginning of my journey with epilepsy. For two and a half years, I ... Read More
Giving back: Cole’s ‘Socks for Smiles’
When Cole was 10, he experienced his first seizure. Two years later, he has multiple seizures a day and is treated at the Boston Children’s Hospital Epilepsy Center. In the spring of 2019, Cole and his family were inpatient at the hospital for an electroencephalogram (EEG) to check on his epilepsy. While he was in ... Read More
Mary’s journey with genetic epilepsy
Lots of people don’t like the heat. It makes them feel uncomfortable and sluggish. But for Mary, being outside on a hot day means risking a seizure. So can running in gym class or having a fever. That’s because Mary has genetic epilepsy, a form of Dravet syndrome — a rare epilepsy syndrome caused by ... Read More
Looking toward the future in epilepsy care and treatment
“There’s a revolution happening in epilepsy treatment,” says Dr. Philip Pearl, director of Boston Children’s Hospital Epilepsy Center. Dr. Pearl and other members of the center celebrate Epilepsy Awareness Month by sharing what excites them about the future of epilepsy treatment, from targeted therapies to minimally invasive surgeries, and their continued hope for our patients ... Read More
Staff Spotlight: Meet Andrea Lerude
Andrea Lerude is a certified child life specialist on the inpatient neuroscience floor at Boston Children’s Hospital. She’s worked at Boston Children’s for more than five years. What does your job involve? As a child life specialist, I provide developmentally appropriate coping support to children in the hospital, in the form of play. Basically, I ... Read More
Staff spotlight: Meet genetic counselor Beth Rosen Sheidley
In honor of Genetic Counselor Awareness Day, we sat down with Beth Rosen Sheidley, MS, CGC, co-director of the Epilepsy Genetics Program at Boston Children’s Hospital, to learn about the field and practice of genetic counseling. What is the role of a genetic counselor? There are about 30 genetic counselors at Boston Children’s across many different departments and ... Read More