Del Mar resident Alice Evans has been hard at work for the past four months prepping for this Saturday’s Walk for Angelman Syndrome at Carmel Valley’s Ocean Air Park.
And while it’s been hectic to organize, Evans finds the effort gratifying.
“The walk is designed to show people that they’re not alone in this journey with Angelman and that other people support them and are going through the same thing,” she explains, who is a co-chair of the event, along with her husband, Mark. “Raising funds and awareness for Angelman is the most important thing.”
For Evans, the effects of Angelman syndrome hit close to home. Her 36-year-old daughter, Whitney, was one of the first people diagnosed with Angleman syndrome in San Diego in the early ’90s, and at the time she was one of just 140 cases in North America.
“Now those numbers have quadrupled,” said Evans of the syndrome, which affects an estimated 1 in 20,000 people. “During those early days it was a tremendous challenge, but it’s given us this amazing opportunity to meet so many people from all over the world and share our story. That’s the silver lining.”
As of now there’s no cure for Angelman syndrome — whose patients suffer from intellectual disabilities, speech impairment, and seizures — so raising funds for research is essential to the cause. Along with Saturday’s walk at Ocean Air Park, 36 other events are scheduled for across the United States and Canada, all with the common goal of eradicating its effects and making Angelman syndrome a thing of the past.
“We have about 25 children with Angelman syndrome attending and about 500 people are planning to participate,” said Evans, who has done stints on the Angelman syndrome National and International Boards throughout the years, and has participated in an annual conference on the syndrome in Chicago since 1993. “Giving back is so important now, especially with so many more young families facing the same challenges we did.”
The San Diego Angelman Syndrome Foundation Walk kicks off at 10 a.m. Saturday, May 16, come rain or shine, at Ocean Air Park in Carmel Valley. Participants will be cheered on by the Torrey Pines cheer squad, and enjoy free pizza courtesy of Oggi’s, as well as a silent auction and the chance to win tickets to Disneyland and Legoland.
The walk is a passion project for the Evanses, who have devoted much of their life to find a cure and care for their daughter. “We love our children,” Alice said. “The walk is almost like a family reunion for a lot of us, since we see fellow families with Angelman syndrome about once a year now.”
For information about signing up for the walk or about Angelman syndrome, visit https://www.angelman.org.