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Robbie Ivey takes new role as MDA goodwill ambassador PDF Print E-mail
Written by Peter Nocerini   
Tuesday, April 15, 2014 11:10 AM

Friends surround Robbie Ivey after he was named ambassador for the Muscular Dystrophy Association during an assembly at West Iron County High School last week. Front row, from left, are his sister, Maggie Ivey; Robbie; and his mother, Carrie Ivey. Back row: Joe Frisque, Dickinson-Iron Intermediate School District; Dave Painter, DNR conservation officer; Jaci Baumgartner, Robbie’s godmother; Dawn Ver Haagh, executive director, Green Bay MDA office; Michael Ivey, cousin and Key Club president; Krist Atanasoff, Krist Oil Co. vice president; Rick Angeli, Krist Oil Co. retail operations manager; Rhonda Colberg, Dickinson-Iron ISD; and Sarah Burns, health care services coordinator, Green Bay MDA office.
IRON RIVER—Anyone who knows Robbie Ivey knows he is ready for anything, smart as a tack, highly motivated and not afraid of any challenge.
Been there, done that. What’s next?
What’s next for the West Iron County eighth grader is a new role as goodwill ambassador for the Muscular Dystrophy Association’s Green Bay office. The announcement was made before his classmates during an assembly April 10.
“He will represent the MDA locally in the 40 counties that we cover,” said Sarah Burns, health care services coordinator for the MDA’s Green Bay office, which covers the U.P. and northern Wisconsin.
“We want to give Robbie a hand for taking on this really incredible role in representing the MDA in this very large capacity.”
As goodwill ambassador, Robbie will be traveling around the region, meeting and thanking sponsors and sharing the story of what he lives with on a daily basis.
“His role is really incredible and important,” Burns told Robbie’s classmates, “because he has to get up in front of people and tell his story.”
Robbie, who turns 15 soon, suffers from Duchenne muscular dystrophy, the most common childhood form. It is marked by progressive muscle weakness. There is no known cure at this time—but scientists are working hard to find one, and that’s part of what his job with MDA is all about.
Robbie’s mother, Carrie Ivey, will also play a big role, Burns said. “We couldn’t do it without the families that we serve, sharing their story, saying thank-you to the sponsors that we serve and trying to get new people involved.”
The MDA’s mission is to improve the lives of people with muscle diseases—there are over 40 different kinds. Burns explained to the students that the disease is progressive, “meaning that they continue to worsen over time.”
The MDA does its work in a number of ways. The big one is funding research into treatments and the biggest goal of all: a cure.
It also offers clinics where families can meet with specialists and advisors; equipment programs that help kids with MD live as independently as possible (Robbie uses a power wheelchair); support groups and advocacy programs. All offered at no charge to families affected by MD.
Robbie’s classmates seemed most interested when Burns talked about the summer camp that MDA runs for kids from 6 to 17 years old. It gives parents a respite while also giving the kids some new experiences.
“It’s an opportunity for these kids to just be kids.” They spend time with others their age who are dealing with the same kind of challenges. That means everyone fits in just fine.
Along with activities like fishing and pontoon rides, the campers have been known to “mess around” and come up with pranks. Despite the fact they all have muscle diseases, they are all normal kids. And kids are kids.
“What do you think of the girls at summer camp?” Burns asked Robbie. The audience laughed. “No comment!” he finally answered.
“Basically,” explained Robbie’s mom, “camp is a free for all. There are very few rules.” Bedtime is normally 11 p.m., but on the final night last summer, the campers were pushing 1 a.m., striving for as much time as possible with their new friends.
Besides Robbie, his family and friends, the Muscular Dystrophy Association has another big advocate in Iron County: the Krist Oil Co.
Every year, the 68 Krist Quik Food Marts in the Upper Peninsula and northern Wisconsin sell big green MDA shamrocks during February and March. Krist Oil has been doing this for six years, donating from $11,000 to $16,000 to the MDA each year.
So a highlight of the program was when Krist Atanasoff and Rick Angeli of Krist Oil presented Robbie and MDA with a check for $16,211, the proceeds from this year’s shamrock sale.
“We’d like to thank all our customers,” said Atanasoff, Krist Oil vice president, “for supporting Krist Food Marts and the cause.”
Another part of the ceremony involved Dave Painter, DNR conservation officer, who has taken Robbie on hunts for deer, turkey and bear, using adaptive equipment and a special hunting van from Wildlife Unlimited of Iron County.
“Robbie is my hunting partner,” Painter told the students. “We’ve had some times together—some of my best hunts ever have been with Robbie.
“He never says no. He’s always up to the challenge. He will be a great goodwill ambassador.”
“Robbie’s a big part of our school,” said principal Mike Berutti as the ceremony ended. “Support this cause any way that you can.”
Local volunteers are collecting pledges for a Muscle Walk for MDA, taking place at the Fox Cities Mall near Appleton on April 26. Burns asked the middle school students to help collect donations or pledges for “Team Robbie.”
The high school’s Key Club is also forming a team that will go the extra mile and then some to support Robbie and the MDA.

 

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