100% of 2017 race proceeds will be donated to:
A local organization that supports hundreds of families in the metro area affected by CHD. They provide funding for an Inpatient Fund at Children’s Mercy, care packages for children undergoing open heart surgery, support meetings for parents, and more….including Camp Systole.
A medically supervised, free, day and overnight camp for children ages 6-15 years living with congenital heart disease, as well as additional programs for their families.
The children who attend Camp Systole may not be eligible for other camping experiences due to the medical supervision and care they require. Many of these children have had several open-heart surgeries, pacemakers, and/or heart transplants, and they may face more surgeries in their futures. This population of children and their families face adversity every day and know that they are at high-risk for mortality. Camp Systole would give these children a chance to be “normal”, to forget about their disease and have a camp experience in a safe and welcoming environment. They also will be able to connect with other kids with whom they share unique life experiences, surgeries and scars. For some children this might be their only chance to experience an overnight stay away from home. Parents of children with these heart conditions often have anxiety about letting their children participate in “normal” activities as well, and having a medically supervised camp is comforting. A place like Camp Systole is a place where these children and their families can get away from the everyday stressors of their life, where they can share the emotional, mental, and social challenges of their lives with others who have similar experiences, and where they can be empowered with increased self-esteem and knowledge about their disease.
Children’s Mercy Hospital (Kansas City)
Jon Wagner, DO, FAAP, Pediatric Cardiologist/Clinical Pharmacology Children’s Mercy Hospital and Clinics Assistant Professor of Pediatrics University of Missouri-Kansas City School of Medicine
Medical Research Project for CHD
Our research is to determine the amount of TGF-β in coarctation patients that have had surgery. It is expected that coarctation would be associated with elevated TGF-β given how it appears and its close association with bicuspid aortic valve. The amount of TGF-β has never been calculated in patients with coarctation of the aorta and this study is the first step in a series of investigations aimed at determining expression of TGF-β in congenital heart lesions associated with blood vessel changes. If it is elevated in coarctation of the aorta, this will give us the proof needed to study losartan in our patients with coarctation of the aorta and therefore, improve their quality of life after surgery.
The mission of this foundation is to provide subsidized and affordable heart screenings to the youth of Kansas City and surrounding areas. This heart screening detects undiagnosed heart defects in older children that could tragically lead to Sudden Cardiac Arrest, especially in student athletes. CHD Babies is a big supporter of this movement and has hosted several heart screening events with Athletic Testing Solutions.
Providing angel care packages for local heart families who have lost a child to CHD, in memory of heart angel Karalyn Smith.