When she was born, Eva Sweeney, 6, was diagnosed as being one of about 130 people in the world to have STXBP1, a neurological genetic mutation. The condition has left Eva nonverbal and nonmobile. She will be the guest of honor at Saturday’s Small Town, Loud Voice dance in Leechburg. SUBMITTED PHOTO

The wearing of the green is fine for St. Patrick’s Day. But those who sign up for March 18’s seventh annual Shamrock Shuffle 5K & 1-Mile Fun Walk and the following Small Town, Loud Voice, St. Patrick's Day-themed party later will be raising some green for worthy causes.

The run and walk will start from the West Leechburg Fire Department Social Hall 116 Gosser St., Leechburg, Armstrong County with registration beginning at 9 a.m., and the events starting at 10 a.m. The race and the walk both begin and end at the social hall.

Organizer Ian Coyle of Semper Gratus — Latin meaning always grateful — a certified 501(c)3 Pittsburgh-based organization that supports pediatric patients suffering from cancers, diseases, and disabilities, said his group has tried to make both events fun for the entire family.

“I always tell people you don’t have to be a fitness buff to attend,” said Coyle of the 5K and walk. “We are going to have a heated indoor registration area. We’re going to have Disney princesses there, so people can get their photos taken. We’re going to have Marvel characters there, too, Captain America and Thor. We’ll have a balloon artist and face painting by Leechburg High School art students.”

Coyle said race and walk participants are encourage to wear costumes to mark the occasion and even bring dogs if they are leashed. Vendors and sponsors will have tables set up at the race’s beginning.

Coyle said the Small Town, Loud Voice dance afterward is more than just a social event.

“It’s a party with a purpose,” he said. All the proceeds from the race/walk and dance will go to the Leukemia and Lymphoma Society and to fighting STXBP1, a rare genetic mutation.

Two Seneca Valley Senior High School juniors, Kacey Christensen and Sarah Vescio, will speak before the race/walk’s beginning.

The two, have been named student visionaries of the year by the Leukemia and Lymphoma Society for the efforts to raise $30,000 by the end of the Month.

“We’re midway through and about halfway to our goal. We’re doing fundraising in the schools,” Christensen said. “Sarah and I got to the nine schools in the district with all the teachers and the kids as well. We ask businesses to sponsor us and send letters to our friends and families”

Her counterpart also had good things to say.

“It’s been going really well. We’ve been reaching out to stores for items for gift baskets, anything to reach our goal of $30,000,” Vescio said.

Vescio and Christensen decide to take on the task because the goalie on their Seneca Valley soccer team, Virginia “Ginny” Fronk, was diagnosed with Hodgkin’s lymphoma. They named their fundraising effort Team Ginny Strong in her honor.

“She’s in remission right now, but she had to deal with that,” said Christensen.

“We’re going to talk to raise awareness with everybody about blood cancers and tell her story,” said Vescio. “We want to let people know all donations will stay in Western Pennsylvania.”

The social hall will also host the St. Patrick’s Day-themed dance fundraiser from 5 to 10 p.m. with the doors opening at 4:30 p.m.

The dance will feature beer and soda, light refreshments, a caricature artist, a gift basket auction, a 50/50 raffle and live music. All attendees of the dance must be 21 or older. IDs will be checked at the door.

Eva Sweeney, a 6-year-old from Ross Township, Allegheny County, will be the dance’s guest of honor. Eva was one of about 130 diagnosed cases of STXBP1, a neurological genetic mutation, in the world when she was born.

STXBP1 has only been diagnosed as early as 2008 with no more than 750 known cases.

“She’s nonverbal and nonambulatory,” said Eva’s mother, Melanie Sweeney. “Her condition means the messaging from her brain to the rest of her body isn’t going through.”

“She uses a wheelchair, but not independently,” her mother said. “She’s 100% dependent on us for her care.”

“If you're like me, STXBP1 might be new to your vocabulary. I never heard of it until meeting this incredible family,” Coyle said.

Registration links can be found at www.kvcares.com.

Coyle said that to date, Semper Gratus has raised nearly $200,000 benefiting a number of nonprofits including the Leukemia and Lymphoma Society, the Cystic Fibrosis Foundation, the Muscular Dystrophy Association, Cerebral Palsy, Alzheimer’s Association and Familylinks.

The Sweeney family of the North Hills consists of, from left, Lena, father Brian holding Leah, mother Melanie and Eva, who has a rare genetic mutation. SUBMITTED PHOTO