LIBERTY — Brian and Christina VanName started DJ's Dudes in memory of Brian's brother, Dale VanName Jr., who passed away in 2014 after a battle with cystic fibrosis. There is no known cure for the disorder. DJ's Dudes organizes walks and fundraisers for the Cystic Fibrosis Foundation to honor their brother, friend, and family member DJ.

Cystic Fibrosis (CF) is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys and intestine. Long-term issues include difficulty breathing, and coughing up mucus as a result of frequent lung infections.

Brian explained that his brother DJ was diagnosed when he was six-years-old. His mother said that he was always getting sick with a cough or the flu but they didn't know what was wrong. They brought him to the hospital and they thought he had a tumor in his liver. He spent two weeks in the hospital before being transferred to Mount Sinai where they discovered it was actually CF that was making him sick.

The doctors also believed that Brian had CF as well. So the two brothers, who were only a year apart (Brian is older), spent many weeks with each other in the hospital receiving treatment for CF.

“They would keep us there for like two weeks every year and we called it a tune up,” Brian said. “We kind of saw it as a hotel stay, because we were roommates, we had the room to ourselves. They had a game room in the hospital, so we would do that. I think that's where DJ got his outgoing attitude, because we used to walk the floor and talk to the nurses and talk to the other patients.”

Brian was treated until he was 16, when the doctors determined that he didn't have CF. However, the road to trying to get better for DJ continued. Brian and Christina explained that due to the disease DJ had a lot of issues as a child. He missed a lot of days at school because he was always in and out of the hospital. Therefore he was held back in kindergarten and later had to take special education classes. He was on a lot of medications including antibiotics as he had frequent lung infections.

Into his teenage years and adulthood, DJ had to go on a feeding tube and had a port put into his leg so that they could flush in medication and take blood tests. In October 2013 he underwent a double lung transplant. Unfortunately, during the operation he contracted an infection. But the transplant allowed DJ to live a normal life and he went on a cruise with his fiancée. But it took a turn for the worse and he was back in the hospital. Brian said he spent the last few months of his life in the hospital, before they took him off life support and he passed away at the age of 35.

Brian and Christina describe DJ as having a great sense of humor and a lot of friends. He liked NASCAR, the New York Giants and the outdoors. They started DJ's Dudes in 2015 when they did their first walk in Rockland County (there are no walks closer by). Since then, they have done four more walks and are organizing more.

One of the reasons they started the group is to offer help and be a resource of information for those struggling with CF and their families. They say the CF Foundation has been an incredibly helpful and supportive resource, although they didn't know about the foundation when DJ was going through treatment. That's why they want to bring awareness to people in Sullivan County, so they don't have to go through it alone. Over the past three years, DJ's Dudes has raised almost $8,000, and they hope to raise $3,500 this year.

In the United States more than 30,000 people are living with CF, and approximately 1,000 new cases of CF are diagnosed each year. The good news is the prognosis for cystic fibrosis has improved due to earlier diagnosis through screening and better treatment and access to health care. In 1959, the median age of survival of children with CF in the United States was six months. In 2010, survival is estimated to be 37 years for women and 40 for men.

Brian said treatment has advanced since DJ was diagnosed with CF. The CF Foundation lists therapies that help people and it has 120 care centers. Some of the treatments include a vest that vibrates the chest to help loosen and thin mucus, and medicines that are made into a mist and inhaled through a nebulizer.

For more information about the CF Foundation, go to https://www.cff.org. And for more information about DJ's Dudes, or to join or make a donation, go to http://fightcf.cff.org/goto/djsdudes.