Parents start fundraiser, give back to lifesavers
by JILL SCHMELZER Reporter

Debra and Chad Glaser of Amherst wanted to start a fundraiser that would give back to three organizations that helped save their son Ethan's life.

Ethan, nicknamed "E," was born with a rare liver disease called biliary atresia. Children born with the disease have severe liver complications, requiring medical care that often results in a liver transplant.

In 2003, Chad became a living donor for his son, donating 20 percent of his liver to Ethan. Livers regenerate, Chad explained.

Ethan, now in kindergarten at Dodge Elementary School, is doing well but will require lifelong medical care. There is no known cure for biliary atresia, and it is not known what causes the disease.

"One thing scientists do know is that it is not genetic," Chad said.

The Glasers decided to start "Ski 4 E," which is a fundraiser for The Fund for the Cure: American Liver Foundation, Columbia Presbyterian Morgan Stanley Hospital's Center for Liver Disease, and the Children's Organ Transplant Association.

The event will be held at 9:30 a.m. Saturday, March 3 at Holiday Valley, 21 Monroe St., in Ellicottville.

"There are a lot of golf outings and walk-a-thons in the summer," Chad said. "But there was nothing in the winter, and skiing is near and dear to me."

The Glasers want to continue the fundraiser annually, raising monies for the research facilities and doctors that saved their son's life.

The American Liver Foundation researches the disease Ethan suffers from and is the leading agency in pediatric liver transplants, Chad said.

There are approximately 200 to 300 biliary atresia cases annually.

"It is an extremely rare disease," the liver donor explained.

Doctors from Morgan Stanley Children's Hospital's Center for Liver Disease followed Ethan's case from diagnosis through transplant to today.

"They saved Ethan," Chad said. "We owe these doctors everything."

The Fund for the Cure helps families who may not have insurance or their policy does not cover the cost of transplants.

Although insurance covered the cost of Ethan's transplant, the boy was taking up to 13 medications at once, and the co-pay costs totaled $40 for each medication.

The organization helped the Glasers and it continues to help people in similar situations, Chad said.

The Ski 4 E event will focus on organ donor awareness, and Upstate N.Y. Organ Transplant Association will be on-site for organ donation education and registration.

Special guest Chris Klug, an Olympic snowboard medalist and liver transplant recipient, will be attending the event. He will answer questions about organ donations and speak to the skiers about liver disease and the importance of becoming a donor.

For every skier who raises $200 in donations, Ski 4 E, along with the support of Holiday Valley, will issue an eight-hour ski pass at no cost to the participant. All donations raised by the skier will be equally distributed among all three groups listed above.

Chad said any person who raises any amount of money for Ski 4 E can join the Glasers and the rest of the skiers for breakfast, donated by Tim Hortons, and a cookout during lunch, with beverages donated by Pepsi. Holiday Valley is the premier sponsor.

Families who raise $350 or more in donations can ski for free.

People are asked to bring their donations to the event on March 3. The Glasers encourage people to participate in the ski-a-thon, collecting donations from sponsors.

For more information, call 568-2027 or e-mail in fo@ski4e.com. Register online at www.Ski4e.com.

Those who would like to support the fight but cannot participate in the event can send donations to Ski-4-e, P.O. Box 14, East Amherst, N.Y. 14051.

e-mail: JSchmelzer@beenews.com