Archive for advocacy
It’s personal: How the Boston Children’s progeria research community brought new life to an old drug
In late November, the U.S. Food and Drug Administration (FDA) approved a repurposed cancer drug called lonafarnib to treat Hutchinson-Gilford progeria syndrome, better known as progeria — an ultra-rare incurable genetic disease associated with rapid aging. On average, children with progeria die before age 15, usually the result of rapidly accelerated atherosclerosis resulting in heart ... Read More
Avoiding a dangerous attraction to magnets: Lainey’s story
A few days before Valentine’s Day in 2013, 2-year-old Lainey Styles wasn’t feeling well. She had vomited, was lethargic, and had a fever. After visiting the pediatrician, her mother Jessica thought Lainey had a stomach virus. But the appearance of a softball size bruise around Lainey’s belly button a couple of days later prompted her ... Read More
Poverty predicts worse cancer outcomes, even in children receiving top-tier care
A pair of recent studies suggests that even among patients receiving advanced cancer care, poverty is a predictor of worse outcomes. The disturbing findings raise many questions that follow-up studies are now exploring. Key takeaways Poverty was associated with 3.7-fold higher mortality among children receiving targeted immunotherapy for high-risk neuroblastoma. Household poverty was associated with ... Read More
Caring for immigrant children in politically contentious times
Facing public outrage, the U.S. Department of Homeland Security recently reversed their decision to end medical deferred action, a program allowing immigrants with serious illnesses to remain in the country while receiving lifesaving medical treatment. Among those most relieved by the reversal was Dr. Lakshmi Ganapathi, pediatric infectious disease specialist at Boston Children’s Hospital and ... Read More
Going back to school with a chronic condition
Going back to school can be a time of excitement for many families: Your kids are looking forward to reconnecting with their friends — and you’re looking forward to watching them learn and grow. But for caregivers of children and teens with chronic or complex conditions, preparing for a new school year involves much more ... Read More
When puberty betrays you
Author Chris Edwards delivered an engaging keynote address at Boston Children's 2019 Experience Week, describing his transgender experience and journey.
Children wait for new cancer drugs 6.5 years longer than adults
A 20-year analysis finds that FDA-approved cancer drugs took a median of 6.5 years to go from the first clinical trial in adults to the first trial in children. That’s not good enough for researchers at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, who are calling for expanding children’s access to experimental cancer therapies. “It’s ... Read More
Please don’t judge: Supporting a friend whose child has a mental health condition
Shannon Larson is a member of Boston Children’s Psychiatry Family Advisory Council, a volunteer group of family representatives as well as members of Psychiatry leadership, who work together to improve patient care and families’ experiences in the Department of Psychiatry. When my children were younger, I was always able to help them maneuver the difficulties of growing ... Read More