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Penguins notebook: Weekend events will honor teen who died from rare condition

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Thursday, Sept. 5, 2013, 7:12 p.m.

Debbie Heitzenrater is usually not one to ask for help.

She has not had to — much — while trying to honor her late son, Ryan.

“The outreach has been incredible,” Heitzenrater said Thursday on the eve of a weekend youth hockey tournament and 5K run to raise funds for the Heitz 61 Foundation.

“People we don't know have sent emails asking how they can help, and someone came up the other day just to shake my hand. Ryan's story really impacted people.”

Ryan Heitzenrater died in March from complications of hemophagocytic lymphohistiocytosis, a rare cellular condition that most commonly afflicts young infants and children. A healthy and active 13 year old, Heitzenrater played youth hockey with the son of Penguins coach Dan Bylsma. His diagnosis last January was a shock to the family, Debbie Heitzenrater said.

Along with her husband, Doug, and elder son, Brandon, Debbie Heitzenrater started the Heitz 61 Foundation to “help other kids and keep Ryan's spirit alive.”

The nonprofit foundation's mission statement is to promote higher education and encourage physical well-being and teamwork in sports. It aims to distribute scholarships and grants, and events such as the ones this weekend will help, Debbie Heitzenrater said.

Bylsma will drop a ceremonial opening-faceoff puck for the eight-team Bantam club hockey tournament that begins Friday. Two public skates are scheduled Saturday. The 5K, for which 370 participants were registered as of Thursday morning, is slated for 9 a.m. Sunday.

All events will be at the Robert Morris University Island Sports Center, and a Chinese auction will include various items from the Penguins.

Bylsma said this weekend is “definitely important to me and my family.”

“When Ryan passed there was an immediate discussion of wanting to do something,” Bylsma said. “Everybody decided it would happen in the fall.”

Opening loss

The Penguins lost, 4-1, to Ottawa in their opening game of a rookie tournament in London, Ontario. Left winger Cody Sylvester scored for the Penguins, who will play Toronto on Saturday.

Around the boards

Tickets for regular-season games go on sale at 10 a.m. Friday. About 2,500 seats are available for each of the 41 home games. ... An open practice will be part of the Mario Lemieux Foundation's 6.6K Run and Family Walk, set for Oct. 6.

Rob Rossi is a staff writer for Trib Total Media. Reach him at or via Twitter @RobRossi_Trib.

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