Remember when PW reported on the Newborn Screening and Gene therapy for the Immune Deficiency SCID? Well guess what our friends at the Immune Deficiency Foundation are doing? The IDF…
La terapia genética se ha hablado desde hace bastante tiempo, pero las noticias recientes han convertido la esperanza en realidad para los bebés nacidos con adenosina desaminasa (ADA). Los bebés…
Happy Friday Patient Worthians! We have two intriguing stories from PW contributors this week, detailing their plight with rare disease. Additionally, we have a pretty cool outcome for a pretty cool kid…
Imagine you're a new parent and your two-month-old starts experiencing some bizarre symptoms. Along with his high fever, his skin turns red and starts peeling at an alarming rate. Multiple infections follow;…
Heather Smith suffered one of the greatest losses known to humanity: the death of her firstborn son, Brandon. He was seemingly healthy until he caught a cold at six months old,…
You may have seen the Jeffery Modell Foundation's name around town, literally, from their educational posters. I was thrilled to come across one in the Chicago O'Hare International Airport. The…
Heather Smith, who is the President and Co-Founder of SCID Angels for Life Foundation, is one tough cookie. Smith has dedicated her life to helping other parents as a result…
Although I’m no “spring chicken,” I still grapple daily with the reality that innocent babies get sick and die, or that they don't die, but they languish and suffer; it’s…
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