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Genetic Linkage

Seeking a Second, More Specialized Opinion

A challenge of living with a genetic disease, especially a very rare one, is that the mutation may affect different body parts. A health care practitioner may not consider a patient’s inherited condition, especially if the most recognizable symptoms don’t fall into his or her specialty.

Shirley Banks discovered the importance of seeking a second, specialized opinion when the doctor she’d been seeing for many years had a disturbing reaction to a question.

The Long Road to a Diagnosis

The Banks family has osteogenesis imperfecta, (OI) which affects 1 in 20,000 live births.  Read More 
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In Praise of Mentors

In Praise of Mentors

I found him on Linked In, an unusual but familiar name among the many that the networking website had somehow deduced I should connect to. Elof Carlson, a blast from my past.

Back in fall 1975, when I was at SUNY Stony Brook, he taught Bio 101, and enlisted senior biology majors as his teaching assistants. Dr. Carlson, author of 14 books and a beloved teacher of many, was the first person to teach me how to teach. Read More 
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The Forever Fix is Published! A Short Reader’s Guide

Great display at Albany Barnes + Noble
Reports are trickling in as people read my new book, The Forever Fix: Gene Therapy and the Boy Who Saved It (St. Martin's Press). It’s been amazing to hear the emotional ups and downs that accompany the experience, taking me back to how I felt writing the book.

For months, the words poured out, seemingly out of my control. I’d interview parents and researchers, usually late in the day, and be unable to sleep, immersed in their stories.  Read More 
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Animal Research Saves Lives: A Blast From My Fruit Fly Past

Gene therapy gave vision to Corey Haas. (photo: Dr. Wendy Josephs)
Chicago – I left fruit fly research circa 1982, shortly after earning my PhD in genetics, because I didn’t think insects with legs growing out of their heads was of much import to human health.

Although I went on to a rewarding career as a writer, I quickly learned that I was wrong about the  Read More 
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