On April 7, 2015, HudsonAlpha Institute for Biotechnology will host the fourth annual Double Helix Dash.
The Double Helix Dash 5K is one of the most unique races in the world. It starts and finishes on the distinctive double helix path in McMillian Park and takes runners through part of Cummings Research Park. Proceeds from the event support HudsonAlpha’s childhood genetics disorders research.
HudsonAlpha scientists, in collaboration with the University of Alabama at Birmingham, the University of Louisville, and North Alabama physicians are using genomics to help families with children suffering from undiagnosed genetic disorders. Most of these families spend years going from doctor to doctor in hopes of receiving a diagnosis. These so-called “diagnostic odysseys” are expensive and emotionally exhausting.
Teresa Smith and her 13-year-old daughter, Lakely, are among those who have directly benefitted from HudsonAlpha’s pediatric genomic research.
Lakely suffers from severe developmental delays and because of HudsonAlpha research, was finally diagnosed with Pitt-Hopkins Syndrome, a rare genetic disorder. There is no cure for Pitt-Hopkins Syndrome, but Teresa Smith is now equipped with knowledge that will help her learn more about her daughter’s condition.
“Thanks to HudsonAlpha, we know Lakely has Pitt-Hopkins Syndrome, and we are learning more and more. It’s such a relief. Words can’t express how thankful I am to finally have a name for this disorder.”
Two out of 100 children are born with intellectual or developmental delay, many of which arise from genetic factors. HudsonAlpha is on the leading edge with this project. While the study has just begun yielding information, the results are quite promising.
“We are well on our way to using novel genomic technologies to provide diagnoses to hundreds of children with unexplained genetic conditions in North Alabama,” said HudsonAlpha faculty investigator Greg Cooper, Ph.D., who is interested in identifying and characterizing the ways in which variation in DNA shapes people’s lives and in using genomics to diagnoses children with intellectual disability and developmental delay.
“We are also learning many new things about how our genes shape our lives and contribute to general knowledge that may ultimately lead to better diagnosis, treatment and prevention of many diseases.”
Presented in partnership with the Huntsville Track Club, the Double Helix Dash begins at 5:30 p.m. and will start and finish on Genome Way. Immediately following will be a one-mile fun run.
The dash is open to everyone from serious runners to those who just want to cheer and watch the race on Explorer Boulevard. Please show your support for the diagnosis and treatment of childhood genetic disorders by participating in the Double Helix Dash. Registration is open until March 31. For more information and to register, visit www.doublehelixdash.com.