Stephen Damiani, Leah Kaminsky and Ryan Taft were interviewed by Natasha Mitchell this morning in a piece entitled Mission Massimo: the promise and perils of genetic medicine.
I encourage you to listen to this for two reasons. One, as an ongoing journey and remarkable feat of human endeavour towards improving the quality of Massimo Damiani's life and others who have leukodystrophy. It strikes me that this is a very positive response to a situation that any parent would dread, and I applaud the resolve, ingenuity and courage of everyone involved. Mission Massimo explains things in more detail, including how to lend support.
The second reason for listening is because of how Ryan Taft responds to questions about the bioscience that underpins the journey so far, including Next-Generation Sequencing. I thought Ryan did a great job of articulating the actual and potential benefits of molecular bioscience (and, tacitly, the bioinformatics involved) while maintaining balance and perspective about our human tendency to take technology in unanticipated directions.
I wish Massimo and the Damiani family, Ryan, Leah and all members of Mission Massimo every success.