ELK GROVE, CA (MPG) - Several people walked around the Elk Grove Park pond on May 17 to help support those who have Angelman Syndrome.

More than 500 people came out to participate in the walk. The event was set adjacent to Strauss Island with many tents of sponsors set up. With the walk’s route being the loop around the pond, many signs were on display alongside the pond of some “angels” with mini-bios and factoids about the children who have Angelman Syndrome. 

According to the Mayo Clinic, Angelman Syndrome is a condition caused by a genetic change. It is mostly caused by genetic changes on chromosome 15 called the ubiquitin protein ligase E3A gene. The disorder causes delayed development, speech and balance problems, mental disability and sometimes seizures. 

Although the event was to bring support and awareness for the disorder, the event provided entertainment such as music, raffles and a mini-playground for toddlers. 

Amanda Moore, the chief executive officer of the Angelman Syndrome Foundation, who is also from Indianapolis, Ind., said that not a lot of people know about Angelman Syndrome, but the disorder affects 1 in 15,000 people in the United States. She noted that the event has been going on for 26 years and that the goal is to raise money to help families with a member that has the disorder, as well as clinical research and transformative research to help find a treatment for Angelman.

Moore said she has a child who has Angelman Syndrome, and getting the diagnosis is quite devastating for families. There are times when some families wait years to get the diagnosis, and getting an answer is important.

“It’s a lifelong journey that’s filled with a lot of ups and downs,” Moore said. “Our kids deal with a lot of seizures, are hospitalized often and can’t tell us what’s going on. So it’s hard for us to know how to help them.”

Jake Tuttle, co-coordinator of the Sacramento Angelman Strong, said he became aware of the disorder because his daughter was diagnosed with Angelman when she was 11 months old. 

Tuttle noted that the walk was the main fundraiser for the Sacramento area. Because this was the third event in Elk Grove, Sacramento Angelman Strong raised $50,000 in the previous two events. Although the event has existed for 26 years, the Sacramento walk was moved to Elk Grove in 2023.

“Our organization took on the event because it’s so vital to link members of this rare community,” Tuttle said. “Because it’s one in 15,000 births with this condition, it’s very rare to find people who are going through the same difficult journey, but this event lets all of those individuals be recognized and connects all of the families.”

Teresa Richardson, a Modesto resident and mother of 17-year-old Jaden Richardson, who has Angelman Syndrome, said the walk was a good way for families to gain support from those who also have relatives with diagnoses of the disorder. 

Being from Modesto, it didn’t bother her to have to come up to Elk Grove and meet other people.

“If Modesto had a walk like this, I would participate, but because Angelman is so rare, it’s difficult to get people in your area to do an event like this,” Richardson said. “The Elk Grove event feels good that I was willing to drive an hour to meet other Angelman families. When you’re isolated in little towns, it’s harder to get people together.”