Walking for a cure

Raising awareness was just as important as the $20,000 raised at the

inaugural Walk-n-Roll put on by the Southern California Chapter of

Families of Spinal Muscular Atrophy on Sunday at Johnny Carson Park.

More than 200 people participated in the event by finding sponsors

and bringing friends and family to complete the 5-kilometer trek

around the park.

“In everyone’s opinion it was a huge success,” said Rosie Roope,

the president of the Southern California chapter of the group.

Spinal Muscular Atrophy is a genetic disease that strikes young

children and destroys the nerves that command voluntary muscle

movement like crawling, walking, swallowing and head and neck

control. The money raised at the event will fund research for the

disease, which currently has no known cure.

The Burbank event was dedicated to the memory of Conner Roy King,

the son of Burbank Police Officer Phillip Wise, who died of the

disease about a year ago when he was 4.

“My wife and I were both very humbled and honored at the same

time,” said Wise, who with his wife, Marla, spoke at the event. “We

love Conner so much, he’s still very much a part of our family. Any

way we can carry on with Conner’s memory, we’re very honored to do

that. We felt very pleased to assist the organization.”

Funds for research are crucial, but events such this raise

awareness about a disease that effects 6,000 babies every year, Wise

said, and that is nearly as important.

“Before Conner, I’d never heard of this,” Wise said. “They public

can learn about SMA and we can also try and get the word about what

it is, and how devastating it is to young children.”

Raising awareness of Spinal Muscular Atrophy is one of the group’s

main functions, Roope said.

“We were focused mostly on trying to raise the awareness of

everyone in our community,” she said. “SMA is the No. 1 genetic

killer of children under the age of 2 and many people don’t know

that.”

Many local groups including the Foothill Civitan Club, the John

Burroughs High School Junior Civitan Club and students from

Providence High School and St. Francis Xavier School all helped with

the events.

“We were so excited that all these people from the community came

out to help,” Roope said. “That was so important to us to have people

out there, helping and coming together and building awareness.”

Roope, whose son also has Spinal Muscular Atrophy, said events

such as the Walk-n-Roll offer families affected by the disease a

chance to relate to others dealing with some of the same struggles.

“These families rarely get to talk to each other,” said Roope.

“They find it invaluable to sit down and talk to another family

that’s going through the same thing they are.”

For more information on Families of SMA or the disease itself,

visit the group’s website at o7www.fsma.org/.

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* SARAH HILL covers education. She may be reached at (818)

637-3205o7.

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