The Global Gastroschisis Foundation is proud to partner with the Mid-West Pediatric Surgical Consortium to produce this Fellowship Program.
This Fellowship has been made in Honor of Navaiah Fulk. This fellowship is specifically designed to study the outcomes of patients with gastroschisis within the Mid-West Pediatric Surgical Consortium (MWPSC). The Global Gastroschisis Foundation intends to fund this program for the lifetime of the foundation. The 2021 selection is James A. Fraser MD –a current research fellow at Children’s Mercy Hospital, Missouri that will hold the title as The Global Gastroschisis Foundation Fellowship in memory of Navaiah Fulk.
MWPSC has already established a gastroschisis registry and is using this to characterize gastroschisis outcomes leading to standardization that will allow us to test prospective questions in the consortium. Papers regarding how to close, manage at birth, etc. are coming from this work. Additionally, the MWPSC is collecting worldwide data from adult gastroschisis patients for the purpose of identifying long term morbidity and standardized ways to Rx. They will utilize that data in order to produce studies within the MWPSC, done in the Helmrath Lab, and then that data will be used by the consortium to develop a prospective way to treat – this takes time to do – year(s). The key is getting enough data to know what we are dealing with and this will lead to papers describing the issues along the way
The deliverable action is the creation and implementation of these patient data bases within an established consortium that will dedicate time and effort towards building the infrastructure to get the word out.
James A. Fraser MD was born in Montreal, Canada and grew up in Los Angeles, California where he completed his undergraduate training at the University of Southern California (USC). He attended medical school in Hamden, Connecticut at the Frank H. Netter MD School of Medicine and has finished his third year of General Surgery training at Thomas Jefferson University Hospital in Philadelphia, Pennsylvania. He is currently a research fellow in the Surgical Scholars Program within the department of pediatric surgery at Children’s Mercy Hospital in Kansas City, Missouri.
Thus far, James has submitted an abstract entitled: “Evaluating the Risk of Peri-Umbilical Hernia after Sutured or Sutureless Gastroschisis Closure” to the American College of Surgeons 2021 Clinical Congress and will submit a manuscript of the same title in the near future.
On April 15 – the morning after the 2019 Charity Golf Tournament – Navaiah Fulk, tragically passed away at 18 years old. Navaiah was a Gastroschisis and short bowel syndrome survivor and a two time transplant recipient. She spent her last seven months battling with organ rejection. Our hope is that continued medical research and dedication will help disseminate critical information with regard to the treatment of gastroschisis, as well as long term outcomes. The foundation chose to name this Fellowship in her honor after following her life since the genesis of our foundation. Navaiah endured over 30 surgeries and spent the bulk of her time between Georgetown (her transplant center, hours away from her home and sisters) and Connecticut Children’s Medical Center, dealing with complications arising from transplant. Over the past 10 years, Navaiah and her family made an impact on the lives of so many within the organization. Her mother, Kailani played an intricate role in the early years of the organization, specifically to the transplant community. Navaiah made an effort to provide support to everyone in the children’s unit whenever she was admitted, as well as raising awareness in her hometown for transplant and Gastroschisis – positing smiles and hope wherever she went. Navaiah and Kailani are truly the embodiment of Ohana within the Gastroschisis community at large.
2019 Research Fellow
Charlene J. Dekonenko, MD of Children’s Mercy Hospital, Kansas City (CMH) was selected for the Fellowship as she has been an excellent research fellow this year at CMH and will continue on as a research fellow with us next year as well. She is incredibly hard working, diligent, and focused and is able to produce excellent research.
Charlene was born in Texas and did her undergraduate training in San Antonio, TX at St. Mary’s University. She then went to medical school at University of New Mexico and has finished her third year general surgery resident at the University of Kansas. She has taken time off from her general surgery residency to pursue additional training in pediatric surgery research as a Surgical Scholar at Children’s Mercy Kansas City. Dr. Dekonenko is married and has one young child.
90% of the funds for the Fellowship were raised during the Annual Avery’s Angels Charity Golf Tournament, which is held on April 14th in honor of Avery’s birthday. Avery is the son of Founder, Meghan and her husband Jared. We at Avery’s Angel’s are so appreciative of Jared, and of the over 70 golfers and 18+ sponsors who made this possible.
Thus far, Charlene has presented at the 2020 Academic Surgical Congress (February 2020) an abstract entitled: “Does Use of a Feeding Protocol Change Outcomes in Gastroschisis: A Multi-institutional Report.” A manuscript of the same title was also submitted to Surgery and we are awaiting the outcome of that. She will also be presenting a poster at the American Pediatric Surgical Association Meeting in May 2020 entitled: “Outcomes in Gastroschisis: Expectations in the Postnatal Period.” This will also be submitted as a manuscript in the future. Children’s Mercy hospital is in process of finalizing a prospective observational study for the MWPSC, which Charlene has been instrumental in the designing.