Down syndrome group making an impact

By Greg Gross, Sentinel Reporter, March 7, 2010

Last updated: Monday, March 8, 2010 10:58 PM EST

In Focus
Each Monday, The Sentinel revisits a compelling person or issue covered in the past.

This week’s story revisits the Central Pennsylvania Down Syndrome Awareness Group, which was founded by local parents of children with Down syndrome.

For more information about the group, check out their Web site at

It began as chance encounters by total strangers and has become a group of friends that are more like family.

What the three Carlisle families have in common is that they all have a child with Down syndrome.

That spurred them to create a non-profit organization, the Central Pennsylvania Down Syndrome Awareness Group, that promotes awareness of Down syndrome, said Brian Guilliaume, a founding member and president of the group.

“I felt there was a need for this group in the community,” he said.

Guilliaume’s son, Anthony, 6, has Down syndrome.

About six years ago, Cori Guilliaume, Brian Guilliaume’s wife, met Tori Smarr while in a local store. Smarr’s son Nicholas also has Down syndrome.

In 2007, Heather Fox-Kauffman, vice president of the group, found Cori Guilliaume after reading a short story she wrote in a book called “Gifts,” which is a collection of stories written by mothers who have children with Down syndrome.

Fox-Kauffman noted that the Guilliaumes were listed as being from Carlisle and promptly looked them up in the phone book and called them.

Her adopted son Carson, 5, has Down syndrome.

That was on a Friday night, Fox-Kauffman said, and by Sunday, the two families were eating ice cream and brownies on the deck of the Guilliaume’s home.

“When we met, it was an instant connection,” she added.


Before meeting the Guilliaumes, Fox-Kauffman said she hadn’t known any other families in the area who had a child with Down syndrome.

Meeting them allowed her to ask questions that had been lingering.

“It was something we so desperately needed,” Fox-Kauffman said.

It also proved to be a friendship for both family’s children. Fox-Kauffman said the two families meet about once a week so the boys can play.

With the awareness group in its second official year as a non-profit organization, Cori Guilliaume said, it has grown by leaps and bounds.

When September rolls around, the group will sponsor its third annual Buddy Walk, a fundraising event held at Carlisle Area High School. The walk was established by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome.

Though there are a number of walks held around the county, there wasn’t a local one until the group got its walk started, Cori Guilliaume said.

Money raised from the walk remains local and is used to help fund the group’s events and is given out in the form of grants to families to promote the personal development of those with Down syndrome, she said.

The group also puts on family-focus nights that provides information to families with a member who has Down syndrome.

Though it’s tough to say how large the group has become, Cori Guilliaume said, attendance at events is never lacking. Over 300 people attended the 2009 Buddy Walk.

The group has even grown to include three would-be mothers whose unborn children were diagnosed with Down syndrome through prenatal screening.

Over 80 percent of fetuses that are diagnosed with Down syndrome are terminated, Cori Guilliaume said. She said the group is looking to reach out to more women who fall under that category.

Then there’s the wild side of the group.

In February, they held a belated Valentine’s Day dance and party at the community center in Giant Food Stores’ Camp Hill location.

The dance was open to anyone, Brian Guilliaume said, and was the site of at least one first date. Around 125 people attended the dance, he added.

“Everyone walked away smiling,” Brian Guilliaume said.

As for the future, Cori Guilliaume and Fox-Kauffman said the sky’s the limit.

They said they’d like to see the group to continue to grow and for it to evolve into full-time gigs for them. Fox-Kauffman said she’d like to see a facility open to work specifically with people with Down syndrome.

“We are hoping to continue to grow and hold more events with families with Down syndrome,” Cori Guilliaume said.