By Kami Nguyen

Town Crier Editorial Intern

Cystic Fibrosis Research Inc. sponsors an annual Teen and Adult Educational Retreat where those with the life-threatening illness can share their personal stories. This year, the retreat is scheduled Aug. 12-16 at the Jesuit Retreat House in Los Altos.

Isabel Stenzel, diagnosed with cystic fibrosis at birth, began attending the retreat in 1991, then volunteered as a counselor for children with cystic fibrosis. She currently works on the activities planning committee after serving as chairwoman in 2000.

“It actually started in the late ’70s as a summer camp for children; but in 1996, we began having more teens and adults (attending),” she said.

The camp was opened to help teens living with the condition to learn the importance of health care. Stenzel said proper health care is very important and it can take up to three hours a day to complete the proper exercises and treatments.

“Fifteen-year-olds don’t want to waste their time (doing this),” she said. “At the retreat, they see role models that are 20 to 25 years old and go to college, have jobs and relationships, (and they realize) they have to take care of themselves.”

The retreat activities include live entertainment, talent shows, discussion panels and a memorial service for former participants of the retreat. This year they plan to light 200 candles in memory of past participants, Stenzel said.

Because there are only two retreats scheduled in the United States, the Los Altos retreat draws many out-of-state participants.

“We had some coming from Indiana, Texas, New Mexico and a handful from Oregon,” she said. “Some can’t come every year because (flying) does get expensive.”

Those who attend are charged a $200 fee to cover the cost, a total of nearly $25,000 for the event.

The fear of cross infection has been a controversial issue, Stenzel said. It one of the reasons more cystic fibrosis retreats are not held.

Participants are carefully screened to ensure the safety of themselves and others. They are advised not to hold hands or kiss and to wash their hands frequently. Separate bedrooms as well as separate bathrooms are provided to avoid infections.

Stenzel said contamination can only occur between people suffering from cystic fibrosis and cannot spread to those who do not have the disease.

Anna Modlin, a 21-year-old from Palo Alto, said she has been attending the retreat since she was nine when it was still a camp. She still attends because the experiences are valuable and so are the companionships.

“You get a lot of social support and realize that you’re not the only one going through this,” she said. “You’re with people who understand, not like people in the ‘real world’ who won’t.”

Sign-ups for the retreat are open until Aug. 5. For more information call 404-9975.