Fraternity backs fun camps

By Tyler Davis

Muscular dystrophy and sickle cell disease are two potentially fatal illnesses with no cure that affect hundreds of thousands of Americans each year.

For children who are afflicted with these disorders, life can be painful and short. With an increase in funding for research, medications for both diseases are becoming increasingly effective.

One campus organization trying to make a change in the lives of young people with these disorders is the Phi Kappa Tau fraternity. PKT is working with Paul Newman’s SeriousFun Camps, a foundation started by late actor Paul Newman, to raise funds for kids with terminal illnesses.

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PKT is hosting a fundraiser April 8 at Quatro’s Pizza in Carbondale, benefiting SeriousFun Camps. Quatro’s will donate 20 percent of all proceeds from customers with PKT or who bring in a slip with information about the event.

Taylor Saul, a sophomore studying marketing from Galesburg, is the philanthropy chair for PKT. Saul said his fraternity regularly works with SeriousFun Camps.

“We have an event with Quatro’s that we’re excited about,” he said. “Last semester, we held a bingo night where all the proceeds went to the SeriousFun Camp.”

Ryan Conley, a sophomore from Mt. Vernon studying civil engineering and PKT’s vice president, said his fraternity’s relationship with SeriousFun Camps is far-reaching.

“Paul Newman was a Phi Kappa Tau and now his camp is our fraternity’s national philanthropy,” Conley said. “It’s all for SeriousFun Camps, we just want to raise as much money as we can for our philanthropy.”

SeriousFun not only contributes to research funding, but also provides a free camp for kids with serious disorders. Kids can go to one of the nine locations in the United States or one of the 50 camps across the world.

The money raised by the event will go to numerous camps and research for terminal illnesses, including sickle cell and muscular dystrophy. Both diseases have had recent breakthroughs in medication for treatment.

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Sickle cell, a disorder that affects more than 100,000 Americans, causes intense pain, frequent hospital visits and can result in death. In the past, no treatments were very effective against the disorder, but it is now being successfully treated by a medication called hydroxyeura.

Though doctors are not quite sure how it works, hydroxyeura is known to increase fetal hemoglobin count in most of its users. Fetal hemoglobin is associated with milder forms of the disease.

Dr. David Nathan, a hematologist and president emeritus of the Dana-Farber Cancer Institute, said in a March 3 Washington Post article, the medication is not a cure-all yet, but can lead to a bigger breakthrough.

“We have patients [with] 70 percent adult hemoglobin and 30 percent fetal, and they are fine,” Nathan said in the article. “If we can raise fetal hemoglobin to 30 percent [in all sickle cell patients], we can cure this disease.”

Sickle cell is just one of the illnesses SeriousFun Camps helps children deal with. Muscular dystrophy, or MD, has also seen recent breakthroughs in the search for a cure.

Duchenne muscular dystrophy, the most serious form of MD, is the top genetic killer of children in the world with no approved medication or treatment, according to The Race to Yes, a muscular dystrophy awareness organization.

MD slowly breaks down and disables the muscles in the body, rendering a person unable to walk, stand or even feed his or herself, according to the National Institute of Neurological Disorders and Stroke. The progression is predictable; children often lose the ability to walk by their teenage years, bathe or eat on their own by their 20’s and die before the age of 30.

Doctors are looking into a new treatment which slows the progression of the illness and prolong life in sufferers. The Race to Yes is circulating a petition to the White House via the Internet to get the Food and Drug Administration to approve a new drug immediately.

Conley, whose cousin Tory suffers from MD, said he has seen the results of the illness firsthand.

“Lately, Tory has been having the problems with the muscles in his arms,” he said. “I remember when he would run around with us as little kids, but since then, it just got harder and harder.”

The fundraiser runs all day on April 8 and applies to any delivery, carryout or dine-in order from Quatro’s.

Tyler Davis can be reached at [email protected]on Twitter at TDavis_DE or at 539-3311 ext. 269

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