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Down syndrome families gain knowledge, friendship from New Directions group
10th Annual Buddy Walk scheduled for Saturday
By By Jill Meier
Challenger editor
Challenger editor
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EmailSeptember 08. 2010 9:16AM
When Kylie Hodge and her family moved to Brandon last January, they gained new friendships in an unexpected way.
Hodge has three children, ages 9 and 5, and 2-year-old Keanin, who has Down syndrome. It was during a visit to the Sanford Children’s Hospital with Keanin that she heard about the New Directions Down Syndrome Association. She emailed Association member Carin Griffith to learn more about the organization, and was immediately drawn to the group.
“It’s just a wonderful organization,” Hodge said. “You can read so much, but actually having other parents (of Down syndrome children to talk with), is such a huge support system.”
Griffith’s 6-year-old daughter, Rylee, has Down syndrome, and said New Directions has provided a wealth of information about Down syndrome for their family.
“As many experts and professionals that we have talked to over six years, we’ve learned more about the ins and outs of Down syndrome and parenting from other parents,” she said. “That’s been our biggest source of friendship.”
Families with children that have Down syndrome are the one common denominator that the 100-plus family-member Association shares.
That’s what drew Jeff and Christie Bowar’s family to the group.
Their 1-year-old son, Rigley, has Down syndrome.
“It’s like another family,” Christie Bowar said. “It’s nice to have people to bounce things off of.”
The Bowars joined the Association last fall, and said in that time they’ve relied on advice from other parents in the group during Rigley’s first year of life.
“Now that we have a year under our belts, we can be resources for someone else,” Christie said.
Jeff Bowar said he’s gained valuable knowledge from group discussions. “It’s just fun to go and listen, and then you start absorbing all you can,” he said. “Like the birth to three program and knowing what to ask for. You have to be pro-active, you have to be the advocate for your child.”
Griffith, who is the director of the New Directions-hosted Buddy Walk, said networking opportunities is just one facet of the organization. The mission of New Directions Down Syndrome Association is to provide information about Down syndrome, provide direction to resources and networking opportunities. Membership, she said, is open not only to families of Down syndrome children, but to friends, neighbors, therapists, nurses or whomever wants to join.
The Association also produces a quarterly newsletter that includes information about Down syndrome, upcoming family events and meetings. Their events have included holiday parties, weekend camping trips and this October, a bowling outing is planned.
“Another major thing that New Directions has started is a medical outreach program,” Griffith said. Through the program and in cooperation with Avera McKennan and Sanford Health hospitals, the Association supplies packets of Down syndrome-related information to parents.
Griffith said the Association hopes to expand this program to smaller hospitals around the area.
They’ve also created a family assistance program that provides funds to assist families with Down syndrome-related medical, therapeutic and educational expenses.
The group is able to provide all these services through funds raised at their annual Buddy Walk. This year’s event – the 10th annual – is Sept. 11, at Sertoma Park in Sioux Falls.
Last year’s Buddy Walk drew over 800 participants, and Griffith is aiming to break the 1,000 mark this year.
“I think we can do it,” she said.
She’s banking on a day of fun activities planned for the entire family, including a performance by the Dance Gallery’s Adaptive Dance students, a visit by balloon artist Mr. Twister, face painting, and more. Lunch will also be available for purchase at the park.
“The one thing that’s exciting about this year’s walk is the entertainment,” Griffith said. Chris Burke, an entertainer with Down syndrome who starred as “Corky” on ABC’s “Life Goes On,” will perform in concert with his band, “Chris Burke with Joe and John deMasi.”
That night, New Directions will host a meet and greet for Burke at the Homewood Suites by Hilton, 3620 W. Avera Drive in Sioux Falls. Griffith said the meet and greet is open to the public. Snacks and beverages will be provided.
The Buddy Walk was created in 1995 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.
The walk has grown from 17 walks in 1995 to nearly 300 walks in 2010.
Last year, more than $10 million was raised nationwide to benefit local programs and services. The New Directions Buddy Walk raised $12,400.
BUDDY WALK 2010
What: 10th Annuwal Walk (1-mile) for Down Syndrome Awareness
When: Saturday, Sept. 11 – 10 a.m. to 1 p.m. (Registration begins at 10 a.m.; Walk starts at 11 a.m.)
Where: Sertoma Park, 49th and Oxbow, Sioux Falls
Cost: Pre-registration - $20 per family; Day of Walk - $25 per family
Why: Funds raised support New Direction Down Syndrome Association’s efforts to offer services that support and enhance the quality of life for individuals with Down syndrome and their families.
Website: www.newdirectionsdsa.com (Coming later this fall)
For more information: Contact Carin Griffith, Buddy Walk director, 310-7570.
Hodge has three children, ages 9 and 5, and 2-year-old Keanin, who has Down syndrome. It was during a visit to the Sanford Children’s Hospital with Keanin that she heard about the New Directions Down Syndrome Association. She emailed Association member Carin Griffith to learn more about the organization, and was immediately drawn to the group.
“It’s just a wonderful organization,” Hodge said. “You can read so much, but actually having other parents (of Down syndrome children to talk with), is such a huge support system.”
Griffith’s 6-year-old daughter, Rylee, has Down syndrome, and said New Directions has provided a wealth of information about Down syndrome for their family.
“As many experts and professionals that we have talked to over six years, we’ve learned more about the ins and outs of Down syndrome and parenting from other parents,” she said. “That’s been our biggest source of friendship.”
Families with children that have Down syndrome are the one common denominator that the 100-plus family-member Association shares.
That’s what drew Jeff and Christie Bowar’s family to the group.
Their 1-year-old son, Rigley, has Down syndrome.
“It’s like another family,” Christie Bowar said. “It’s nice to have people to bounce things off of.”
The Bowars joined the Association last fall, and said in that time they’ve relied on advice from other parents in the group during Rigley’s first year of life.
“Now that we have a year under our belts, we can be resources for someone else,” Christie said.
Jeff Bowar said he’s gained valuable knowledge from group discussions. “It’s just fun to go and listen, and then you start absorbing all you can,” he said. “Like the birth to three program and knowing what to ask for. You have to be pro-active, you have to be the advocate for your child.”
Griffith, who is the director of the New Directions-hosted Buddy Walk, said networking opportunities is just one facet of the organization. The mission of New Directions Down Syndrome Association is to provide information about Down syndrome, provide direction to resources and networking opportunities. Membership, she said, is open not only to families of Down syndrome children, but to friends, neighbors, therapists, nurses or whomever wants to join.
The Association also produces a quarterly newsletter that includes information about Down syndrome, upcoming family events and meetings. Their events have included holiday parties, weekend camping trips and this October, a bowling outing is planned.
“Another major thing that New Directions has started is a medical outreach program,” Griffith said. Through the program and in cooperation with Avera McKennan and Sanford Health hospitals, the Association supplies packets of Down syndrome-related information to parents.
Griffith said the Association hopes to expand this program to smaller hospitals around the area.
They’ve also created a family assistance program that provides funds to assist families with Down syndrome-related medical, therapeutic and educational expenses.
The group is able to provide all these services through funds raised at their annual Buddy Walk. This year’s event – the 10th annual – is Sept. 11, at Sertoma Park in Sioux Falls.
Last year’s Buddy Walk drew over 800 participants, and Griffith is aiming to break the 1,000 mark this year.
“I think we can do it,” she said.
She’s banking on a day of fun activities planned for the entire family, including a performance by the Dance Gallery’s Adaptive Dance students, a visit by balloon artist Mr. Twister, face painting, and more. Lunch will also be available for purchase at the park.
“The one thing that’s exciting about this year’s walk is the entertainment,” Griffith said. Chris Burke, an entertainer with Down syndrome who starred as “Corky” on ABC’s “Life Goes On,” will perform in concert with his band, “Chris Burke with Joe and John deMasi.”
That night, New Directions will host a meet and greet for Burke at the Homewood Suites by Hilton, 3620 W. Avera Drive in Sioux Falls. Griffith said the meet and greet is open to the public. Snacks and beverages will be provided.
The Buddy Walk was created in 1995 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.
The walk has grown from 17 walks in 1995 to nearly 300 walks in 2010.
Last year, more than $10 million was raised nationwide to benefit local programs and services. The New Directions Buddy Walk raised $12,400.
BUDDY WALK 2010
What: 10th Annuwal Walk (1-mile) for Down Syndrome Awareness
When: Saturday, Sept. 11 – 10 a.m. to 1 p.m. (Registration begins at 10 a.m.; Walk starts at 11 a.m.)
Where: Sertoma Park, 49th and Oxbow, Sioux Falls
Cost: Pre-registration - $20 per family; Day of Walk - $25 per family
Why: Funds raised support New Direction Down Syndrome Association’s efforts to offer services that support and enhance the quality of life for individuals with Down syndrome and their families.
Website: www.newdirectionsdsa.com (Coming later this fall)
For more information: Contact Carin Griffith, Buddy Walk director, 310-7570.
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Several members of the New Direction Down Syndrome Association are residents who live in the Brandon Valley School District. They gathered for an informal night of play at McHardy Park recently. Taking in the family fun that night were (from left): the Griffith family, Jeremy Carter, Carin and Rylee; the Hodge family, Dreavin, Rasheed, Keanin, Kylie and Rasheed Jr.; the Matthies familym Maya, Teresa, Brand and Mariah; Griffen Schlekeway, and her mother, Julia; Mason and Mayer Matthies; the Bowar family, Rigley, Christie, Tessa, Grace and Jeff. Photo by Jill Meier |  |
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