One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine. Special guest will be Dr. Alan Mayer, the pediatric gastroenterologist who pointed the way to gene mapping to identify and treat Volker's gut-destroying disease.
This series of articles won the Pulitzer Prize for explanatory reporting and of course you can read the articles right here. This Journal Sentinel link will lead you to the three-part series.
Reviews have been strong for the recently released book. Kirkus Reviews wrote that "the authors do a solid job integrating the personal stories of a wide cast of characters—Nic, his family, and the doctors and researchers involved with his treatment—with the exciting tale of a major medical milestone."
And from Publishers Weekly: "By sequencing all 21,000 or so of his genes, investigators sussed out the right one—a gene known as "XIAP"—and alerted Volker's parents and doctors that they'd chosen the right treatment (a bone marrow transplant). This is a moving, skillfully written book that's well positioned to introduce a broad audience to the profound clinical relevance of whole-genome and exome sequencing."
You can also listen to Kathleen Gallagher and Mark Johnson discuss genomic medicine on The Joy Cardin Show with John Munson on Wisconsin Public Radio. Gallagher notes how she first heard about the story from a tip about "the great things going on at Children's Hospital." It started to be a great story when they met the Volker story - "they'd already been through two years of searching for answers for Nic's disease."
That's where we learn that Nic's mom, Amylynne Santiago Volker, did the search to find Dr. Mayer, not satisfied with the other doctors' lack of answers.
Mark Johnson is a health and science reporter at the Milwaukee Journal Sentinel, where he has worked since 2000. He was a member of the Journal Sentinel team that won the Pulitzer Prize for explanatory reporting on the Nic Volker story in 2011. He is also a three-time finalist for the Pulitzer Prize and has won numerous other awards for his reporting.
Kathleen Gallagher is a business reporter at the Milwaukee Journal Sentinel, where she has worked since 1993. She was a member of the Journal Sentinel team that won the Pulitzer Prize for explanatory reporting on the Nic Volker story in 2011. She was also part of a team that won the 2006 Inland Press Association award for explanatory reporting.
Dr. Alan Mayer is a pediatric gastroenterologist currently in practice with GI Associates, LLC and affiliated with Children's Hospital of Wisconsin. He received his medical degree and PhD in molecular biology at Cornell University, completed residency training at the Children's Hospital of Philadelphia, and subspecialty training at Boston Children's Hospital and Harvard Medical School. He has authored over 30 research articles and book chapters in molecular genetics and intestinal development