I’ll be very honest, three years ago I knew very little about Cystic Fibrosis. I thought it was a lung disease – but had never known anyone with CF so that’s about all I knew. Then three years ago, my nephew and his wife learned that the baby they were having had a liklihood of having the disease. My great-niece, Jozie, was born in October 2011 and was diagnosed almost immediately with CF. Since then I have learned that CF is an inherited disease that not only involves the lungs, but affects the pancreas, liver and digestive system as well. At present there is no cure for the genetic mutation of Cystic Fibrosis that Jozie has. Her treatment involves airway clearance techniques and inhaled medicines. Her parents spend hours daily keeping Jozie healthy. Luckily, they have a tremendous support system and Jozie is doing well. She’s a beautiful, active 2 1/2 year old who has stolen our hearts. Not all CF patients are as lucky.
Since Jozie was born, my family has become involved in fundraising for the Cystic Fibrosis Foundation. With CFF funding, a cure is on the horizon. We participate each May in Great Strides – a walk to raise funds for research. This year’s Great Strides in Wilmington raised over $100,000 for the cause. That’s awesome – but it’s not enough. For the third year, we are also supporting Pipeline to a Cure, a fundraiser sponsored by the Carolinas Chapter of the Cystic Fibrosis Foundation. This benefit, started on the West Coast, celebrates the connection between surfing and CF. The evening includes appearances by local and nationally known surfers and raises money through ticket sales, sponsorships and auctions.
This year I was invited to photograph a group of CF patients for the Pipeline to a Cure event. What a joy it was to work with these kids! They are amazing children with such positive attitudes. I was able to photograph nine patients in several locations. As I spoke with their parents and heard their stories, it made me even more excited to help raise funds to find a cure for this disease.
Meet a few of the Faces of CF.
Pipeline to a Cure will be held on Saturday, August 2 at 6:00pm at the Country Club of Landfall. For more information, you can click on the link above. Or, if you would like to make a donation to the Cystic Fibrosis Foundation, go HERE. Our goal is to make CF stand for CURE FOUND. Or as the CF Foundation says, Give Today for More Tomorrows!