Eighth annual Double Helix Dash to benefit childhood genetic disorders projects

Lace up your sneakers and join HudsonAlpha Institute for Biotechnology for the 2019 Double Helix Dash 5K and one-mile fun run. The eighth annual race takes place Tuesday, April 2, at 5:30 pm and raises funds as well as awareness for HudsonAlpha’s childhood genetic disorders research.

The race begins in front of HudsonAlpha and ends winding through the helix path in McMillian Park. The pathway, built to mimic the structure of DNA, is the world’s largest model of the double helix.

With recent findings linking the RALA gene to developmental delay and novel SCN1A gene mutations to infant seizures, the HudsonAlpha childhood genetics program is making a difference for so many families, both here in North Alabama and beyond. These discoveries are part of  the Clinical Sequencing Exploratory Research, or CSER project. CSER uses DNA sequencing to identify the genetic causes of undiagnosed conditions for children such as Tiana Vega of Madison, Ala.

Tiana, who will be this year’s Double Helix Dash childhood champion, was diagnosed with Rett syndrome. Rett syndrome is a neurodegenerative disorder that is almost exclusively seen in girls and affects about 1 in 10,000 worldwide.

“The major goal of our work is to use genome sequencing to identify the causes of symptoms that are found in children with intellectual and developmental disabilities,” said Greg Cooper, PhD, faculty investigator at HudsonAlpha and a leader of the CSER project.

“HudsonAlpha was familiar to us, but I never actually thought that it would be a part of something personal to our family,” said Victor Vega, Tiana’s father. “It’s going to be a hard road, but we are thankful for the support and resources available right here in Huntsville, like HudsonAlpha.”

The Vegas shared their story of finding a diagnosis for Tiana in a video.

The Double Helix Dash is presented by HudsonAlpha and the Huntsville Track Club. To learn more and register, visit doublehelixdash.org.