Race The Helix: Saving lives with compassionate care and contemporary technology
The list of cases where genomics has helped patients is growing. Here we look at the remarkable experience that the Shenal family had with Greenwood Genetic Center, and how their relationship continues today.
Stephen and Jodi Shenal of Greenwood, South Carolina are passionate advocates for a cause that is near and dear to their family. In 2010, excitedly expecting their second child, prenatal ultrasounds revealed abnormalities in the Shenal’s unborn daughter. Her prognosis was uncertain. Shortly after Ryleigh was born, the Greenwood Genetic Center was called in to assist in her care. Although her initial karyotype was normal, Center Director and Senior Clinical Geneticist, Steve Skinner, evaluated Ryleigh and recommended a microarray to look for even smaller cytogenetic changes. Through the microarray, the Greenwood Genetic Center’s laboratory discovered a microdeletion in chromosome 1, too small to be appreciated through routine karyotyping. At the time there were only 50 documented cases worldwide. The Shenals now had an answer, a community, and most importantly, hope.
Today, four years after her diagnosis, Ryleigh faces challenges, but her progress is steady and her future is brighter because of the compassionate care she received from the Greenwood Genetic Center. The priority for the Center’s team was to find an answer for the Shenals and provide compassionate care for this young family through a very difficult and trying period in their lives.
The Shenals exceptional experience at the Greenwood Genetic Center is not unique, nor did it happen by chance. This center, located in a small town in South Carolina, was founded on two principles- providing all patients with compassionate care and making sure they all have access to contemporary technology. Without both pieces of the puzzle, the Shenals may not have had their answer and certainly would not have the gratitude for GGC that they have today.
The Greenwood Genetic Center was founded four decades ago through an unlikely series of events. Two genetics fellows, Roger Stevenson, MD and Hal Taylor, PhD, developed the idea of a genetics center that was different from any other in existence – different in philosophy and in structure. Armed with genetics expertise and a passionate vision of helping patients and families, Stevenson and Taylor found support in the medical community of Greenwood, SC. Inspired by the vision laid out by these two men, the business community including local businessman and philanthropist, Jim Self, and the state of South Carolina all became involved in making this vision a reality. The Greenwood Genetic Center became the first independent genetics institution in the United States to provide comprehensive genetics services.
The compassionate and innovative vision of the Greenwood Genetic Center continues today, as does the combination of public and private support from institutions such as the Self Family Foundation and the SC Department of Disabilities and Special Needs. The vision of the center has expanded with a focus on the development and delivery of genetic services and expanding treatments to patients and families impacted by birth defects, intellectual disabilities and autism.
Today, this small town experiment is a trusted international leader in the field of genetics and genomics and is recognized for the manner in which they treat their patients – as family, getting the best they have to offer.
Stephen and Jodi Shenal found themselves so grateful for the care they received that before Ryleigh’s first birthday, they organized ‘Race the Helix’, an 5K race and 1 mile walk to raise awareness for those living with genetic disorders and to raise funds for the Greenwood Genetic Center Foundation. The 5th annual ‘Race the Helix’ will take place this fall in Greenwood. The event has grown in each year through increasing community and industry support. All funds raised through ‘Race the Helix’ support the overall mission of the Greenwood Genetic Center and provide advancing technologies and care for families who may have trouble affording it.
How to get involved