Family affected by Angelman syndrome working toward cure
The Richert family — Ashley (left), Mark, Taylor, Luke and Kena — is helping raise awareness and money for Angelman Syndrome as little Ashley awaits a cure for the severe neurolgoical disorder. International Angelman Day is Feb. 15, and Double Horn Brewing Co. in Marble Falls will donate 10 percent of proceeds from customers that day to the cause. Courtesy photo
CONNIE SWINNEY • PICAYUNE STAFF
MARBLE FALLS — Little Ashley Richert can say more with her eyes than some can say in words.
“All the building components for language are in there, but they’re mute,” said Kena Richert, Ashley’s mom. “Those eyes tell you everything you need to know.”
Nine-year-old Ashley was diagnosed with Angelman syndrome, a severe neurological disorder, when she was 8 months old.
Common issues from the disorder include seizures, sleeping difficulties, profound developmental delays and problems with motor coordination and balance.
People with Angelman syndrome require lifelong care.
Ashley parents, Kena and Mark, have made it their mission to work with other families from across the country to share resources and education as well as raise awareness and money to help find a cure.
“When we got the diagnosis, the only thing that could get your heart OK to sleep at night was this foundless hope,” Kena Richert said. “There are two things that stand in the way of a cure. It’s time and money.”
On Feb. 15, which is International Angelman Day, area families have a chance to help raise money for the cause.
Double Horn Brewing Company is donating 10 percent of its proceeds on that day to the Foundations for Angelman Syndrome Therapeutics (FAST) — an all-volunteer board on which Kena Richert serves that raises money for research.
The group, which started three years ago, has hosted fundraisers in Austin and San Antonio and an annual gala in Chicago.
“Generally, we’ve gone to Austin and San Antonio,” Kena Richert said. “This being Ashley’s community, it felt like the right thing to do to bring it local.”
Ashley’s brother and sister, Taylor and Luke, best interact with her with so-called augmentative communication devices.
The family has also shared educational strategies and healthcare resources with other families facing the challenges of a special-needs child.
Angelman affects one in every 10,000 births with the main characteristic being the missing gene that causes the disorder.
The goal of the foundation is to collect about $1 million per year to go directly to four research sites in the country working in tandem.
“When you know (Angelman syndrome) doesn’t have to be the future, you get inspired to change it,” Kena Richert said.
Hours at Double Horn Brewing Company, 208 Ave. H just off Second Street and U.S. 281, are 11 a.m.-9 p.m. on Feb. 15.
“We’re eternally grateful to (Dusty and Tracy Knight) and their company for putting this out there in this way. Just join us for lunch and help us spread awareness,” she said. “If you can’t make it and you want to be part of the cause, a simple way is to donate $10.”
To learn more about the neurological disorder, go to www.angelmanforum.org or search for Cure Angelman on Facebook.
connie@thepicayune.com