In 1989, the gene that causes cystic fibrosis (CF), was discovered by a collaborative research effort involving my own lab at the University of Michigan, Ann Arbor, and colleagues at the Hospital for Sick Children, Toronto. This year marks the 30th anniversary of the discovery, which has yielded life-sustaining targeted therapies for many kids born with this rare disease. The Cystic Fibrosis Foundation asked me recently to talk about “the long, tough road” traveled to find the gene hunt and the ongoing research commitment to help people with CF. Courtesy of Cystic Fibrosis Foundation.
On May 23, Sarah Lawrence College held its Graduate Commencement 2019 under a large tent on the South Lawn of its Bronxville, NY campus. Sarah Lawrence alumna Diane Baker, a pioneer in genetic counseling whom I’m lucky to call my wife, and I gave the commencement address. Afterwards, I snapped this photo with Diane (center) and Sarah Lawrence president Cristle Collins Judd (right). Congratulations graduates!
I took part in the inaugural All of Us Research Program Speaker Series live-streamed on YouTube on March 14, 2019. Here I’m preparing for this 30-minute program with Dara Richardson-Heron, chief engagement officer for the All of Us Research Program. The live stream provided an opportunity to interact with a range of people about the latest advances in precision medicine and how All of Us will accelerate this incredibly promising area of research. Credit: All of Us Research Program
On Rare Disease Day 2019, I got to join Patricia Weltin, founder of Beyond the Diagnosis, Pawtucket. RI, to unveil this portrait of Amber. She was born with the rare Giant Axonal Neuropathy. This portrait was part of a larger exhibit, sponsored by Beyond the Diagnosis, that features kids and young adults with genetic disorders and other rare diseases. Each portrait was beautiful and inspiring in portraying the reality of these kids. That is, none are defined by their diagnoses. All have a beauty in every sense of the word. The unveiling was held at NIH on February 28. Credit: NIH
Steve Katz, director of NIH National Institute of Arthritis and Musculoskeletal and Skin Diseases, recently passed away. It was my honor to offer a tribute in song to my good friend Steve at the 30th annual meeting of his colleagues at the American Contact Dermatitis Society (ACDS) in Washington, D.C. The event was held on February 28, 2019. Credit: Boris D. Lushniak.
