Speakers

JP Clancy is a pediatric pulmonologist and the Senior Vice President of Clinical Research for the Cystic Fibrosis Foundation (CFF).  Previously he served as the division director of Pediatric Pulmonology at the University of Alabama at Birmingham (2003-2010) and the director of research for the Pulmonary Medicine Division at Cincinnati Children’s Hospital Medical Center (2011-2018). His CFF roles include oversight of multi-center clinical research conducted by the CFF Therapeutic Development Network, CFF support of global clinical research networks, investigator-initiated clinical research programs, physician-scientist training and career development and clinical research resources.

Clancy has published over 200 peer reviewed manuscripts with a focus on clinical research outcome measures and airway epithelial biology.

Nathan Grant is the Founder and President of Siblings with a Mission, an international organization that supports siblings of people with complex health conditions and their families. He has also served on the Board of Directors of Project Alive and is the author of several research articles on rare diseases, including the book The MPS Sibling: Short Stories for Brothers and Sisters.

His inspiration comes from his twin brother Nik, who has a rare, genetic condition called MPS II (also known as Hunter syndrome). From Cincinnati, Ohio, Nathan is currently a third-year MD/MBA student at Harvard Medical School and Harvard Business School. He received his undergraduate degree in biology from Harvard College and an MPhil in Health, Medicine and Society from the University of Cambridge as a Harvard-UK Fellow. Inspired by his brother, Nathan hopes to help improve outcomes for people with rare conditions and their families through clinical care, research and advocacy.

Eric Green is the director of the National Human Genome Research Institute (NHGRI) at the U.S. National Institutes of Health (NIH). He is the third NHGRI director, having been appointed by NIH director Francis Collins, MD, PhD in 2009.

Green has been at the Institute for nearly 30 years, during which he has had multiple key leadership roles. He served as the institute’s scientific director for 7 years, chief of the NHGRI Genome Technology Branch for 13 years and founding director of the NIH Intramural Sequencing Center for 12 years.

For just over two decades, Green directed an independent research program that included integral start-to-finish roles in the Human Genome Project and groundbreaking work on mapping, sequencing and characterizing mammalian genomes.

Green earned his MD and PhD degrees in 1987 from Washington University in St. Louis; coincidentally, the word “genomics” was coined in that same year. Throughout his career, he has authored and co-authored over 390 scientific publications. Green has earned several honors and awards, including election to the National Academy of Medicine in 2023.

Genny Jessee is the executive director of the June Jessee Memorial Foundation (JJMF), a nonprofit organization dedicated to providing relief and support to children with medically complex, neurological conditions and their families, offering resources, services and connections to help make their lives easier. She and her husband, Matt Jessee, founded the JJMF in 2016 in honor of their brave daughter, June Jessee, who fearlessly faced the multiple, life-limiting conditions she endured.

Genny leads all of the JJMF’s fundraising and programming to support children with medically complex, neurological conditions and their families. She curates and shares important resources and information through the JJMF website which has become a leading online resource to help parents and caregivers in the St. Louis area and beyond to navigate these chronic, neurological conditions with no specific diagnosis amid a complicated healthcare landscape.

As the lead editor and writer for the JJMF’s blog, Sorry to meet you this way, Genny’s candid and heartfelt blog posts bring to life the challenges, concerns, joys, and emotions families of children with undiagnosed, neurological conditions face, tackling a wide-variety of topics. Genny’s blog is frequently featured on TODAY Parents and Scary Mommy, as well as international parenting websites. Additionally, she has created both online and in-person opportunities for parents to meet and make connections with one another, finding comfort and support from those who understand the significant obstacles of the conditions.

In 2020, Genny was honored with the Missouri Athletic Club Woman of Distinction Award in recognition of the positive impact she has made in the region. She additionally was a finalist for the “Best Kept Secret” in the WEGO health awards for her contribution of impactful content in the online health community.

Previously, Genny held public relations and communication positions for leading agencies in Washington, DC She is the mom of two young boys and enjoys spending time with her family, journaling, exercising, needlepointing, reading and binge watching her favorite TV shows.