LANSING – The Senate Finance Committee today listened to testimony on bills introduced by Sen. Curtis Hertel, Jr. (D-East Lansing) that would create a tax checkoff with money dedicated to increasing support, education, research and awareness of Michigan children born with pediatric congenital heart disorders.
The legislation, known as the Ruby Jane Act, would create a Pediatric Congenital Heart Association Fund in the Michigan Department of Treasury in honor of Ruby Jane Schupbach, the three-year-old daughter of a colleague of Sen. Hertel’s who was born with a congenital heart defect (CHD). To date, she has undergone three open heart surgeries and 10 heart catheterizations.
“Ruby Jane is one of the most carefree children that I’ve ever met, which is incredible considering the hand that she was dealt,” Sen. Hertel said. “While we can’t cure congenital heart defects through law, we can help other little Ruby Janes all over Michigan by providing easy access to well-funded care and support from the Michigan chapter of the Pediatric Congenital Heart Association.”
“These bills would allow the Pediatric Congenital Heart Association to expand our transparency, advocacy and support services for families dealing with congenital heart defects,” said Jennifer Dougherty, Outreach Coordinator of the Pediatric Congenital Heart Association – Michigan. “They will also allow us to increase our reach to all families receiving treatment throughout Michigan.”
In collaboration with patients, parents, providers, and partner organizations, PCHA works to improve quality and outcomes through CHD education, support, research and awareness.
“Children like Ruby and families like us could never say thank you enough to organizations like PCHA and people like Jen Dougherty,” David Schupbach, Ruby Jane’s father, said. “She was one of the first contacts our family had, and she connected us to other families who understand this struggle.”
Some of the greatest medical professionals in the field serve on PCHA’s Medical Advisory Board, a group that meets monthly and provides insight, direction and expertise to support the organization’s programming.
One of the board’s members is Dr. Michael G. Gaies, M.D., a pediatric cardiologist and critical care physician at C.S. Mott Children’s Hospital in Ann Arbor and the Executive Director of the Pediatric Cardiac Critical Care Consortium (PC4). PC4 is an international quality improvement collaborative of more than 50 children’s hospitals dedicated to sharing data transparently, elucidating best practices, and improving outcomes for children and young adults with critical cardiovascular disease.
Dr. Gaies notes that PCHA is committed to assisting and nurturing families just beginning their fight with CHD, and has an established track record of successful advocacy on behalf of CHD families.
“Families of children born with critical congenital heart disease face significant stressors during their child’s hospitalizations and that continue throughout their life,” Dr. Gaies said. “We must fund support of Michigan families confronting these life-threatening conditions to ensure the long-term health and happiness of patients and parents.”
About one out of every 100 people have a CHD of some kind. It is the number one birth defect, yet many are not aware that they even have this condition. Twenty-five percent of babies born with CHD need heart surgery or other interventions in infancy to survive, and thanks to advances in medical research, more than 85% of them now live to at least age 18.
Pictured from left to right, Sen. Curtis Hertel, Jr. (D-East Lansing) is joined by David, Gail, Ruby and Katie Schupbach to deliver testimony about Senate Bills 370-371, or the Ruby Jane Act, before the Senate Finance Committee on June 19, 2019. The legislation would create a tax checkoff for the Michigan chapter of the Pediatric Congenital Heart Association, with money dedicated to increasing support, education, research and awareness of Michigan children born with pediatric congenital heart disorders. Photo credit: David Olds, Michigan Senate Democrats
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