Runners participate in the 2017 Starfish Dash 5K-Run/Walk Race.
For more than 26 years, San Antonio has been home to the Chromosome 18 Registry & Research Society and the Chromosome 18 Clinical Research Center. Both organizations were founded by Dr. Jannine Cody, who made chromosome 18 research, treatment, awareness, and support her mission after her daughter, Elizabeth Cody, was diagnosed 33 years ago.
For the second time, Chromosome 18 is partnering with Valero and UT Health San Antonio to host the Starfish Dash 5K Run/Walk, a free, official Fiesta event aimed at raising awareness about chromosome 18 conditions and providing a health and wellness event to the whole community.
About Chromosome 18 Conditions
Chromosome 18 abnormalities are rare chromosomal disorders with a range of symptoms varying in severity, including low muscle tone, autism spectrum disorders, seizures, and varying degrees of physical and mental developmental issues. The rarity of chromosome 18 conditions – only about one in 25,000 children are affected – makes it a high priority for research, as very little funding is available globally. Currently, there are no federally funded research initiatives or resources dedicated to chromosome 18 conditions.
As a result, the Chromosome 18 Registry & Research Society is dedicated to raising awareness and funds to support the Chromosome 18 Clinical Research Center, the only organizations in the world dedicated to children with chromosome 18 conditions and their families.
“For us families that have a child with a chromosome 18 disorder, [the Chromosome 18 team members] are literally lifesavers,” said Jeff Borello, whose daughter has a chromosome 18 condition. “They provide a service and information to families that is impossible to put a value on. Without their past and current work, we would have been lost 17 years ago when my daughter was diagnosed.”
Benefitting Families Around the World
In nearly three decades, Chromosome 18 has grown to serve more than 4,500 families affected by chromosome 18 conditions globally. While supporting its members around the world, Chromosome 18 has made San Antonio the forefront of chromosome 18 research and treatment.
During this time, the Chromosome 18 Clinical Research Center has released more than 50 peer-reviewed publications and created the Chromosome 18 clinical management guides, which provide a road map of preventative care for individuals affected by chromosome 18 conditions. These clinical management guides draw on more than 26 years of research conducted by the Chromosome 18 Clinical Research Center and are available free of charge to families and doctors around the world.
“With these kinds of difficulties of grasping the public’s attention, it is inspiring to see the persistence pay off,” Dr. William Henrich, president of UT Health San Antonio, said during Chromosome 18 Clinical Research Center’s 25th anniversary. “It is inspiring to see this dedication that makes such a profound difference in the lives of so many people.”
Celebrating with Fiesta
(from left) Chromosome 18 Self-Advocates Elizabeth Cody, Ross Traa, and Sarah Fugitt at the 2017 Starfish Dash 5K – Run/Walk.
As part of its mission to raise awareness about chromosome 18 conditions, Chromosome 18 is hosting the Starfish Dash 5K Run/Walk on April 28 at UT Health San Antonio’s campus. This free, official Fiesta event aims to promote health and wellness in San Antonio with a children’s race, live music, local performers, and a health and wellness fair. In addition to health and wellness, Chromosome 18 is raising awareness of chromosome 18 conditions and fundraising for research. Participants who raise $50 or more will receive a Starfish Dash T-shirt and limited-edition Fiesta medal.
“We are excited to raise awareness about Chromosome 18 conditions and offer this free health and wellness event [to] the San Antonio community,” said Emi Behan, director of operations for the Chromosome 18 Registry & Research Society. “There aren’t many free, health-focused Fiesta events that the whole family can participate in, so this event is something special.” Behan hopes that the event will connect chromosome 18 families with the San Antonio community.
Open to the entire community, the Starfish Dash 5K Run/Walk is Chromosome 18’s way of contributing to San Antonio’s many health and wellness initiatives, including the Mayor’s Fitness Council, SA Tomorrow, and the SA Sustainability’s Public Health Focus Area. By making the event free and accessible to all, Chromosome 18 is helping promote healthy lifestyles and physical exercise.
To learn more about Chromosome 18, click here. To participate in this year’s Chromosome 18 Starfish Dash 5K Run/Walk, click here.