Vienna Family Hosts Fundraiser for Cystic Fibrosis

Starting shortly after Christmas, every year for the past four years, Janet Weiner has one thing on her mind: hot dogs, or “weiners” to be exact. Because making the “Weiner Roast” fundraiser for the Cystic Fibrosis Foundation a huge success is something this mom of two young adults with cystic fibrosis is passionate about.

CF is a serious genetic disorder affecting the lungs and other organs. It is caused by mutations in a gene that encodes for a protein which regulates ion and water transport in the body. The defect in chloride and water transport results in the formation of congestion that builds up in the lungs, digestive tract and other parts of the body -- leading to severe respiratory infections, digestive problems, and diabetes.

Eighteen years ago, when Janet and her husband Harvey received the cystic fibrosis (CF) diagnosis for their daughter Melissa (and soon afterwards, her older brother Matt), they vowed to fight to find a cure. Since then, huge advances have been made in both the treatment and overall understanding of the disease. When the Weiner’s children were first born, the life expectancy for a child with CF was just 18 years old. Now, more than half of CF patients are above that age, and the median age of survival has reached nearly 40 – and continues to rise. Recently, the FDA approved a new drug called Kalydeco, which was heralded by President Obama as an excellent example of the promise of personalized medicine – targeted drugs that treat patients with a specific genetic makeup. Kalydeco is as close to a cure as ever thought possible for a subset of CF patients with a specific genotype, and is now being used as the basis for other drugs for the remaining CF patients, including the two Weiner children.

To support continued funding for medical breakthroughs, the Weiner Family hosts the Weiner Roast event at their home at 2024 Spring Branch Drive in Vienna. Admission is free. In addition to unlimited grilled hotdogs, home-baked desserts and cotton candy, attendees will enjoy a DJ, a photo-booth, pictures with Weiner Roast’s mascot “Frank,” a raffle, and a huge silent auction with over 50 different items. A number of local businesses are supporting this event, including hot dog sponsor Foster’s Grille, raffle sponsors Flagship Carwash Center and Target, and Ingrid Calarco of Pink Eucalyptus, who designed Wish Bracelets to support the event. Wish bracelets can be viewed at http://www.pinkeucalyptus.com/wish-and-awareness-bracelets.html. Last year’s Weiner Roast raised over $39,000.

The Weiner children have both benefitted from the advances in treatment. Both Matt and Melissa were four-year varsity rowers for the nationally-ranked James Madison High School crew team. Matt, a rising college junior, is a varsity rower on the crew team at St. Joseph’s University in Philadelphia. Melissa will enter Christopher Newport University as a freshman this fall.

“Our kids have to work very hard to stay healthy, but they are living vibrant, happy young adult lives. We have such hope for the future, and it is all because of the donations of our friends, family, and people we’ve never met. We are so grateful for every dollar of support folks in the Vienna community can provide to our fundraiser this year,” said Janet.

To learn more about this event, cystic fibrosis and/or donate, please visit: http://weinerroast2015.passioncff.org.

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