Racing for Ty: Block hoping to raise awareness for rare disease

Jennifer Block is used to pushing her body to its absolute limit. The Puyallup resident does it pretty much every day of her life.

Block is a competitive triathlete and will take part in Sunday’s fifth annual U.S. Women’s Triathlon at Steel Lake Park.

But the physical challenges Block faces during a race are nothing compared to the challenges 11-year-old Ty Quandt incurs on a daily basis. The Edgewood resident suffers from the rare neurological disease called Niemann-Pick type C. The disease affects primarily children and is always fatal. The vast majority of children die before age 20 (and many die before the age of 10). Late onset of symptoms can lead to longer life spans but it is extremely rare for any person with NPC to reach age 40.

“They only have their childhood to experience a lifetime,” Block said. “That really says it all. My focus has totally shifted. I’m not racing for myself. I’m racing for Ty.”

Block is hoping to raise at least $10,000 in the next two months. Not only will she be participating in the U.S. Women’s Triathlon in Federal Way, but she is also competing in the Black Diamond Triathlon in Enumclaw Sept. 14.

But those triathlons will be nothing compared to what Block will be undertaking next month. That’s when she will be heading to Kona, Hawaii to compete in the 2008 Ironman World Triathlon Championship.

The most prestigious triathlon in the world has competitors complete a grueling 140 total miles of competition, including a two-mile swim in the Pacific Ocean, a 112-mile bike ride and a complete 26.2-mile marathon run.

Block qualified for the Ironman after finishing first in her division (45-49 year olds) at the Coeur d’Alene Triathlon in June.

“This will be the first time I’ve gone to the Ironman,” Block said. “I’ve qualified before, but never went. But my focus has totally shifted this time. It’s not like I’m racing for myself. That is what’s so nice about having Ty in my life. I have a different focus.”

Block’s focus changed to raising the awareness of Niemenn-Pick Disease after Ty’s mother, Karen, contacted her, out of the blue, after reading a newspaper article earlier this summer.

“She basically saw the article about me going to the Ironman and wrote me a letter,” Block said. “She asked me if I would be willing to race in his honor. There was never a question. I was honored and more than happy to do anything.”

Because Niemenn-Pick Disease is rare, it gets little attention and resources for research are minimal.

Niemann-Pick Disease has about 500 cases diagnosed worldwide. Quandt’s type C is usually diagnosed as a learning disability, mild retardation, “clumsiness,” and delayed development of fine motor skills.

In most cases, neurological symptoms begin appearing between the ages of 4 and 10. Generally, the later neurological symptoms begin, the slower the progression of the disease.

Block will be joined by about 1,000 other women at Sunday’s U.S. Women’s Triathlon at Steel Lake Park. The Federal Way event is the second of the four-race U.S. Women’s Triathlon Series, which also includes stops in Illinois, Texas, and San Diego.

The triathlon offers athletes a choice of two different distances —— a Sprint competition (.75-kilometer swim, 19.5K bike, and 6.5K run, completed as an individual or relay team), and the SuperSprint competition (.375K swim, 13K bike, and 3.4K run).

Festivities in Federal Way kick off Saturday at 10 a.m. with the Multisport Experience at Steel Lake Park, where competitors have the chance to register for the race, enter sweepstakes and find deals on athletic clothing, equipment and apparel. Beginning athletes will appreciate the clinics and talks that are designed to help better understand triathlon basics and discuss course details. Karen Quandt will have a booth during Saturday’s Multisport Experience detailing the effects of Niemann-Pick Disease and taking donations.

Race day commences at 7:30 a.m. Sunday with waves of athletes starting the swim three to five minutes apart from one another. The bike course then takes competitors through the rolling hills surrounding the park, Military Road and the Weyerhaeuser Corporate Campus before heading back to Steel Lake. Athletes finish the race with a run around Steel Lake. While the race is underway, roads in the neighborhoods in the immediate vicinity of Steel Lake Park may have limited access (one lane open) or may be closed to all traffic except during an emergency.

A portion of the proceeds from the U.S. Women’s Triathlon Series will benefit The Ovarian Cancer Research Fund, Inc. (OCRF), which is devoted to the formulation of early diagnostic treatment programs and research toward the ultimate conquest of ovarian cancer. Last year’s Federal Way race raised $32,000 for the Ovarian Cancer Research Fund.

Sports editor Casey Olson: 925-5565, sports@fedwaymirror.com