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Society puts abilities first

Support, fun for Down syndrome families

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Like most young adults, Stacey Friesen loves getting together with friends on a Saturday night.

It could be that Friesen, 21, will just hang out with her female and male friends in the hall at a local church. Or they might get together to go out bowling or play mini-golf. Maybe even karaoke.

Friesen has experienced all this fun through Lisa's Saturday Night LiveWires, a social club for young people with Down syndrome.

"I like it -- it is fun," Friesen said recently.

"I enjoy seeing my friends. We play some guitar. We do karaoke. I have lots of songs to sing I can think of," she added, laughing.

Friesen has been participating in LiveWires twice a month for more than five years.

It's just one of several benefits available to members of the Manitoba Down Syndrome Society (MDSS).

From birth to adulthood, the MDSS offers events and support for children and adults living with Down syndrome as well as their family, caregivers, educators and therapists. It emphasizes the abilities of people with Down syndrome instead of the disability.

"The society has been a huge support," Friesen's mother, Pam, said.

"Mainly it's because of the relationships we've made through the years. It has been great."

Ken Hodges, president of the MDSS, and father of Braden, 16, said the organization provides "awareness, advocacy to the school system."

"We certainly provide information to parents on a whole list of things -- everything from medical, social and behavioural. We've been able to provide the whole gamut of support.

"And if we don't have the answers, we will seek someone who does."

The MDSS has about 200 members.

While that number may seem low, it's probably due in part because -- compared to the general population -- only one out of about 700 babies born is diagnosed with Down syndrome.

Studies have shown that with pre-natal testing, more than 90 per cent of Down syndrome fetuses are aborted.

Hodges said that's why the MDSS continues its awareness campaign.

"People are still making that decision," he said.

"But for us it has opened up a whole new world of people we have met. People like Fred Penner, whose sister had Down syndrome.

"And it has certainly been interesting. You don't take anything for granted for anything that you should learn to do."

Hodges said another of the benefits of the MDSS is it also helps you be part of a national organization: the Canadian Down Syndrome Society.

The CDSS is holding its annual national conference in Winnipeg next month with both national and international experts on Down syndrome. American actor Lauren Potter, who plays Becky Jackson on Glee, is scheduled to speak.

Val Surbey, vice-president of the MDSS, and mother of 23-year-old Tim, was there when the organization began more than two decades ago.

"Several of us (with children with disabilities) organized a day at the Health Sciences Centre and the majority of parents there had children with Down syndrome," she said.

"We ended up starting the Manitoba Down Syndrome Society."

Surbey said the first few years the organization was run out of people's homes, but it has since moved into office space in the Society for Manitobans with Disabilities building.

She said the MDSS provides information for families and professionals.

"We offer the first year of membership free for a new parent to give them an idea about what we do."

The MDSS also features numerous activities and get-togethers for its members.

The MDSS hosts See Me Beautiful, an annual conference in the fall for parents and educators, to help support children who have Down syndrome.

The organization's Buddy Night is open to all members aged 16 to 27, and features outings supervised by paid staff and parent volunteers to various places. In recent months, they have gone to a restaurant and then to a Halloween Dance at the Fort Rouge Leisure Centre, while another time they went glow bowling at Academy Lanes.

Baby Love is a semi-annual event intended to help families with young children who have Down syndrome meet each other.

The MDSS also holds a dinner and dance the first week in November to coincide with National Down Syndrome Week.

For fundraising, the organization has an annual Buddy Walk, which brings out hundreds of people.

"The money raised goes to our day-to-day activities, funding awareness programs and funding our social programs," Hodges said.

"It's something they can all do whether they use a wheelchair, stroller, walk or run."

As she makes the transition from teenager to adult, Friesen said she'll continue to fondly remember other MDSS events she has been part of -- and looks forward to others coming in the months and years ahead.

"I really like the dinner/dance. I might do a dance there. And a lot of talking. The supper is so good," she said.

Friesen also is going to be a flag-standard bearer, holding one of the country's provincial flags at next month's national CDSS conference.

"I am looking forward to it -- I am so excited."

How to help

Donations, which are tax deductable, can be sent to: MDSS, 204-825 Sherbrook St., Winnipeg, MB, R3A 1M5

As well, donations to the United Way can be designated to go to the MDSS.

Republished from the Winnipeg Free Press print edition April 27, 2013 B6

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