FOUNDATION In The News

Front Line Genomics, a London-based organization dedicated to delivering the benefits of genomics to patients faster, will be holding a Race the Helix Treadmill Challenge to benefit to Greenwood Genetic Center(GGC) Foundation at their upcoming Festival of Genomics in Boston.

The Festival of Genomics is an international event bringing together leaders in the fields of genetics and genomics. It is designed to be a rigorous, fun and transformational forum for industry, healthcare organizations, academic institutions and vendors. GGC Director, Dr. Steve Skinner, has been invited to speak along with other leaders in the field such as genomics pioneer, Craig Venter, and Harvard renowned geneticist, George Church.

Front Line employees, Freddy White and Carl Smith, were introduced to the Center in a meeting with GGC Cytogenetics Laboratory Director, Dr. Alka Chaubey at the American College of Medical Genetics and Genomic meeting in Salt Lake City, UT this spring. “Dr. Chaubey told us two amazing stories at that meeting – one was the story of how GGC was founded, the other was how they helped one family in particular give their daughter a chance at life,” shared White, Front Line’s Commercial Director. “Hearing about GGC and their work was inspirational, but what really hit us even harder was what that family did for GGC in return. To make sure other families get the same financial support and level of treatment they received, they started up a fundraising event for the GGC Foundation called Race the Helix.”

Race the Helix is a 5K race and 1 mile run/walk held on GGC’s Greenwood campus each fall. A satellite event, Race the Helix-Upstate, was also started this past spring in Greenville. To date these events have raised over $20,000 for the GGC Foundation to support the mission of the Greenwood Genetic Center by funding clinical services, diagnostic testing, research and educational programs.

Front Line Genomics has adopted Race the Helix as one of the social missions for their organization and plans to support the event by holding a ‘Race the Helix Treadmill Challenge’ at the Festival of Genomic on Boston on June 23-24. “The exhibit hall is very competitive with vendors from all areas of genomic medicine and technology in attendance,” shared White. “We will channel this competitive spirit with a treadmill on the exhibition floor. Teams will pay a registration fee and compete to cover as much distance as they can in 20 minutes with a goal of covering 100 miles by the end of the Festival.”

GGC will present prizes and Front Line Genomics is offering speaking time and promotional space in their magazine for the winning teams.

“We are so excited to have Front Line Genomics on board supporting Race the Helix in this very creative and visible way,” shared Chaubey. “This cause is so dear to our hearts and it is tremendous to see other organizations getting behind GGC, and having fun doing it!”

Updates of the Treadmill Challenge will be posted on GGC’s Facebook and Twitter feeds throughout the event. For those wishing to contribute to Race the Helix,
visit the GGC Foundation’s website.

Stephen and Jodi Shenal, founders and coordinators for Race the Helix, a fundraising and awareness 5K held each year on the GGC campus, are pleased to announce that London-based Front Line Genomics has joined their efforts. Front Line Genomics supports scientists, clinicians, business/research leaders and officials, from academia, research institutes, industry, healthcare and government organizations. Their mission is to help bring the benefits of genomics to patients faster.

As part of their commitment to supporting Race the Helix, Front Line Genomics has featured the Shenal family, Race the Helix and GGC in the recent issue of Front Line Genomics magazine. A pdf of the article can also be found here.

“We are so honored to welcome Front Line Genomics to the Race the Helix Family,” shared Stephen Shenal. “To have this international organization support our passion and share their time and resources to support GGC is tremendous for our family and all of the other families who are served each year by the Greenwood Genetic Center.”

This year’s event is scheduled for Saturday, October 3. For more information on Race the Helix, visit their webpage and follow them on Facebook.

Photo: The Shenal Family – L-R: Stephen, Ryleigh, Jodi and Tyler

Gift to support collaborative research efforts to benefit patients

John and Norma McAlhany of Greenwood have established ‘The McAlhany Family Center for Collaborative Research’ at the Greenwood Genetic Center (GGC). Through a $1 million gift to the GGC Foundation in honor of their children and grandchildren, the McAlhanys are providing resources to support research efforts between GGC and collaborators from other institutions with the ultimate goal of preventing and treating genetic disorders and disabilities.

The McAlhany Family Center for Collaborative Research, housed in the J.C. Self Research Institute, will be a magnet center fostering joint research between GGC and researchers from Clemson University, Self Regional Healthcare and others. The Center will provide laboratory space, equipment, and support for preliminary and exploratory collaborative research efforts.

“The research supported by the McAlhany Center will serve as a catalyst for innovation for the development of diagnostic tests and effective therapies,” shared GGC Director Dr. Steve Skinner. “This is research that will have a global impact on patients and families as well as on the future of genetic medicine.”

Dr. John McAlhany has served the Greenwood Genetic Center through more than two decades of leadership on the GGC Board of Directors and the GGC Foundation Board of Trustees. “Over the years I have grown to appreciate the vital mission that the GGC serves, and through this gift I am following in the footsteps of my dad who understood the importance of philanthropy,” said John McAlhany. “With this gift Norma and I hope to instill in our family and others a sense of giving and the importance of philanthropic gifts to the future of GGC and other organizations.”

“Over the years, John and Norma have shown unwavering dedication and support of the mission of the Greenwood Genetic Center through their personal service and philanthropic gifts,” said Dr. John Hunt, Chair of GGC’s Board of Directors. “We are honored to dedicate this wing of the JC Self Research Institute as ‘The McAlhany Family Center for Collaborative Research’ in recognition of this very special couple, their family and their permanent legacy supporting genetic research.”

The Self Family Foundation, a longtime supporter of the Greenwood Genetic Center, has provided a $72,000 grant to upgrade the Center’s computational and bioinformatics capabilities. Frank Wideman, President of the Self Family Foundation, presented the check to GGC Director, Dr. Steve Skinner and GGC Diagnostic Lab Director, Dr. Mike Friez.

“Bioinformatics is a field that uses complex computer science tools to analyze biological data,” shared Friez. “New technologies in genetics generate extraordinary amounts of data for both the diagnostic and research labs. In order for this technology to benefit our patients, we must have the computing capabilities to analyze and interpret this vast information in the most efficient manner.”

GGC is the only laboratory in SC providing this high-level testing, called next-generation sequencing (NGS) for patients with disabilities.

NGS testing allows for the analysis of multiple genes at one time to help make a diagnosis and guide treatment. Ten NGS tests are currently available through GGC including panels of genes for autism, X-linked intellectual disability and skeletal disorders. Recently, the lab also began offering whole exome sequencing which analyzes all 20,000 genes in the human genome.

All of these tests require extensive bioinformatics support which, in turn requires large computer clusters and servers that are dedicated to analyzing patient data and identifying variations that may be clinically important.

“The work being done by the scientists at the Genetic Center is nothing short of astounding,” said Wideman. “The Self Family Foundation is proud to be a partner, and provide the tools necessary for these technologies to have a direct impact on patients.”

“We are so pleased to support GGC’s Diagnostic Services in acquiring the system upgrades they need.” said Victoria Hann, Director of Development for the GGC Foundation. “The Self Family Foundation responded immediately to this request, and is committed to engaging other partners to ensure that GGC has the cutting edge equipment, resources and people required to perform in today’s delivery of genetic services.”

Photo: L-R Dr. Mike Friez, Director of GGC’s Diagnostic Laboratories, Frank Wideman President of the Self Family Foundation, and Dr. Steve Skinner, GGC Director.

Brooks Connor of Greenville will never forget the call from her pediatrician telling her that she and her newborn son, Charlie, needed to come to the hospital right away. Charlie’s newborn screening test, also known as the ‘heel-stick test’ came back positive. Charlie was soon diagnosed with isovaleric academia. “It’s a rare genetic condition that we had never heard of,” shared Connor. “Fear and panic set in, but once Charlie was in the capable hands of the Greenwood Genetic Center’s treatment team, we could breathe again. GGC saved my son’s life, and now he’s a happy, healthy, and rambunctious five-year-old.” Charlie follows a treatment plan including dietary therapy and remains under the care of GGC’s Greenville office.

The Greenwood Genetic Center Foundation, along with a team of volunteers referred to as the “Gene League”, is holding its inaugural Race the Helix – Upstate, a 5K race and 1 mile run/walk on Saturday, March 21 at Conestee Park in Greenville. Registration begins at 8am with the race at 9am. All proceeds benefit the GGC Foundation and support the research and treatment services provided by the Center for patients across SC.

Race the Helix is a concept that started on the Center’s Greenwood campus four years ago when another family, the Shenals of Greenwood, were looking for a way to express their gratitude for what the Center has meant to them and their daughter, Ryleigh, who was born with a rare chromosome abnormality. In the first four years of the Greenwood event, over $20,000 has been raised for GGC programs, and many more individuals have become aware of the challenges faced by families deal with genetic diagnoses.

“SC is so fortunate to have GGC as a resource, and the compassion they show to their patients is second-to-none,” shared Jodi Shenal, Ryleigh’s mother. “Race the Helix is one way to help make their vision of providing treatments and cures for families impacted by genetic conditions a reality, and we are thrilled to be expanding it into Greenville.”

Entry fees for the race are $25 for the 5K and $15 for the 1 Mile Run/Walk. Participants who register by March 10th are guaranteed a t-shirt.

GGC’s mobile science laboratory, the Gene Machine, will be on site for tours. Breakfast will be provided and awards will be presented to the top male and female finishers overall and in each age group.

Race the Helix – Upstate is presented by South Carolina Helix Gold Sponsors, Sykes and the Shire Group; Upstate Helix Silver Sponsors County Bank, Gene Dx, Cartagenia & The Kale Family/”Team Lucy Belle”; and the Upstate Helix Corporate-Ready Sponsor, Greenville Health System.

REgister online here.

Theo Lane, District Manager for Government and Community Relations with Duke Energy in Greenwood, presented the Greenwood Genetic Center (GGC) Foundation with a $25,000 grant to support the Center’s educational initiatives, including the Gene Machine Mobile Science Lab and the annual summer science teachers’ course.

GGC’s Director of Education, Dr. Leta Tribble, expressed gratitude for the gift, “We are so appreciative of the Duke Energy Foundation’s commitment to science education. This generous grant will support our outreach to students across South Carolina introducing them to cutting-edge technology, career paths that they may have never considered, and a future in an exciting and growing field of study.”

As a parent of a child with special needs, Lane sees tremendous value in the Center’s programs and research. “Most people have no idea of the gem that is the Greenwood Genetic Center, right here in our own community,” shared Lane, who also sits on the GGC Foundation Board of Trustees. “The Duke Energy Foundation, through our work with STEM education, is pleased to support the efforts of GGC which are encouraging young people to pursue study in this very important field. The students reached today through these programs are the researchers, scientists and clinicians who will make important breakthroughs tomorrow.”

Photo caption: L-R Dr. Leta Tribble, GGC Director of Education; Theo Lane, Duke Energy; Dr. Steve Skinner, GGC Director; and Victoria Hann, GGC Foundation Director.

The Shenal family of Greenwood presented proceeds from the 4th annual Race the Helix to the Greenwood Genetic Center Foundation on Monday. The annual 5K and 1 Mile Run/Walk brought together nearly 200 participants and volunteers to raise support and awareness for the programs of the Greenwood Genetic Center (GGC).

Race the Helix, held at the Center on October 4th, directly raised $5,433 for the GGC Foundation, and an honorarium recognizing the Shenal family’s efforts was made from Affymetrix, bringing the grand total to $10,433. “Once again, our community, family and friends have stunned us with their support for this very worthy organization and the tremendous work being done here at GGC,” said Jodi Shenal, who coordinates the event along with her husband, Stephen. Jodi and Stephen, parents of 10 year old Tyler and 4 year old Ryleigh, created the Race the Helix after their daughter, Ryleigh, was born with a rare chromosomal deletion. The Shenals wanted to do something to give back for the care and support that they received from the Center.

With the help of funds raised through the GGC Foundation by donations and events such as Race the Helix, the Center can continue to be at the forefront of research, treatment and prevention for genetic disorders and birth defects. The Shenals, with assistance from the Foundation, are now planning the first Race the Helix Upstate scheduled for March 21, 2015, in Greenville. “GGC is a statewide organization,” shared Stephen Shenal. “We are excited to help expand the impact of Race the Helix and let all of South Carolina know what great things are happening here.”

The 2014 Race the Helix was generously supported by the Helix Gold sponsor, Sykes, and Silver Helix Community sponsors, Capsugel, Countybank, Expedien, Self Regional Healthcare and the Stevenson family.

Photo: The Shenal family presents a check on behalf of Race the Helix. L-R Ryleigh Shenal, GGC Director, Dr. Steve Skinner, Jodi Shenal, Stephen Shenal, Tyler Shenal, GGC Foundation Director, Victoria Hann and Chair of the GGC Foundation Board of Trustees, Bob Erwin.