Bowling benefit in Fountain Valley helps family remember a rare man with a rare disease – Orange County Register

Matt Cwiertny, who died in 2009 from a rare immune disorder and blood cancer, lives on through his family, which formed a nonprofit in his memory to raise money to fight cancer. (Photo Matt Cwiertny Memorial Foundation)

To his family, Matt Cwiertny was one in a million, and it was a one-in-a-million disease that took down the 24-year-old in October 2009.

From the day the 22-year-old graphic artist walked into an emergency room with a common case of mononucleosis, to his death two years later from an extremely rare immune disorder, complicated by an also rare blood cancer,  Cwiertny became a symbol to his family of ineffable optimism in the face of adversity.

Creating a legacy for him became their cause.

In seven years, the fledgling Matt Cwiertny Memorial Foundation, which is basically a family-created nonprofit, has raised about $200,000 for cancer research.

On Saturday, Sept. 23, the group plays host to its main fundraiser – the seventh annual Bowl-A-Rama – taking over 30 to 50 lanes at Fountain Bowl. The event includes three hours of bowling, pizza and soda for each lane.

Since Cwiertny died, his family has taken up the fight to not only battle the rare diseases but raise awareness and advocate for what they say is an often overlooked group: adolescent and young adult cancer victims, according to Tony Cwiertny, Matt’s father.

“In the seven or eight months after Matt died, we became aware of the plight of adolescent-young adults. We didn’t know any of that,” Cwiertny said.

Helping that age group became the rallying point for the Cwiertnys.

“Three times as much money is spent on research for children zero to 15,” said Tony Cwiertny, a Westminster resident. “And there has been no change in survivability for adolescents and young adults.”

Certainly not when compared to other age groups. While some improvement has been seen in the adolescent-young adult population, a recent report by “The Lancet Oncology” journal shows that adolescent-young adults have “a lower chance of surviving eight relatively common types of cancer than children,” according to a long-running study across Europe.

Matt Cwiertny’s story was common enough when the Westminster resident walked into the emergency room feeling rundown from mononucleosis. He had been exposed to Epstein-Barr Virus, one of the most common strains in the herpes family. About 90 percent of adults in the U.S. are exposed at some time in their lives, often with no symptoms,…

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