Governor Matt Bevin presented Dr. Thomas Abell with a proclamation declaring August 2019 as Gastroparesis Awareness Month. Dr. Abell and other health care providers were on hand for the ceremonial signing in Louisville earlier this month.
At the event, the Governor also announced the creation of a new Kentucky Rare Disease Advisory Council to raise awareness, secure funding and speed the development of treatments and medical protocols that lead to cures. The council will help provide a focus to finding cures for the 7,000 known rare diseases that affect approximately 30 million men, women and children throughout the United States.
“The creation of the Rare Disease Advisory Council will provide an important mechanism to raise public awareness about rare diseases and develop centralized resources for patients, caregivers, and family members,” said Gov. Bevin. “The council will bring together medical professionals and experts from across the state to work on advancing research, diagnosis, and treatment efforts. Kudos to Sen. Raque Adams and the General Assembly for passing this legislation with overwhelming, bipartisan support.”
A rare disease is defined as one that affects fewer than 200,000 people. Jennifer Dunegan is one of the few with the stomach condition gastroparesis. She and her husband Patrick created the support organization, Gastroparesis Support Services Inc. They also serve as ambassadors of the National Organization for Rare Disorders. Patrick Dunegan will now take on the role of inaugural chair of the new council.
“It an honor to advocate for all of those with rare diseases. Following my wife’s gastroparesis diagnosis in 2014, we knew it was important to join with others who face similar difficult rare disease health journeys,” Patrick said.
As part of his work in the council, Patrick said he hopes to secure funding for genetic testing for earlier diagnosis of rare diseases.
Louisville Mayor Greg Fischer also issued a similar proclamation from the City of Louisville.
Dr. Abell, and colleagues, including Dr. Abigail Stocker, Lindsay McElmurray, PA and Kelly Cooper, APRN and others including Surgical Physician support, work in the JH/ULP GI Motility Clinic in 3 Frazier.