Adding Tomorrows

One person dies every day resulting from complications of Cystic Fibrosis. One donor-supported nonprofit organization is making great strides to reduce that number to zero.

Cystic Fibrosis (CF) is a rare and fatal genetic disease. About 30,000 people in the U.S. and 70,000 people worldwide have CF, and 10 million Americans are symptomless carriers of a defective CF gene. According to Melanie Hannah, executive director of the Northeast Chapter of the Cystic Fibrosis Foundation, “CF is the most fatal of all genetic diseases.”

This gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs leading to life-threatening respiratory infections and inhibits natural enzymes in the pancreas to properly break down and absorb nutrients. It’s not uncommon to find patients who take upwards of 45 pills daily in addition to four-hour breathing treatments. Accredited CF Care Centers like Cook Children’s Medical Center in Fort Worth offer the best care, treatment and support for individuals with CF. Treatment plans may include high-calorie, high-fat diets with therapies to unclog airways and mucus-thinning medication and antibiotics.

The Foundation originated in 1955 by parents of a child with CF. It is the global leader in the search for a cure for CF and funds more CF research than any other organization. Nearly every CF drug available today was made possible with the Foundation’s support. Last February, the FDA approved a new medication funded by the Foundation called Kalydeco. “Kalydeco is a game changer. It is a medication that actually corrects the gene mutation in the molecule so that the cell does what it is supposed to do,” said Hannah.

In the 1950s, many children diagnosed with CF did not live long enough to attend elementary school. Today, the predicted median age of survival for CF is in the mid-30s, according to the Foundation. However, people with the disease are increasingly living into their 30s, 40s and beyond thanks to advancements in research and medical treatments. Early detection is key to extending and improving quality of life.

Since 2010, legislation requires that newborns in each of the 50 states be screened for CF. This test is done by taking a few drops of blood from a prick of the heel. Just five years earlier, only five states had added CF to the list of mandatory screening conditions.

Supporters of The CF Foundation will enjoy wine and food prepared by Fort Worth’s most celebrated chefs at La Paloma Ranch on Oct. 16 when the Northeast Texas Chapter hosts their annual fundraising event, 65 Roses. As Hannah describes the event, “In Fort Worth, we throw our best parties in a field. Where else can you get amazing wines, fantastic food, and support a great cause all in one place?”

CF Chapters nationwide raise awareness of CF and essential financial support for the Foundation at 65 Roses, which earned its name in 1965 when a volunteer’s son mispronounced his medical condition.

Mary Weiss’ three sons each had CF. Her son, Richard, was 4 years old when he overheard his mother calling every civic club and service organization asking for donations for cystic fibrosis research. At the time, he didn’t know he had CF, only that his mother worked for “65 Roses.” The name stuck and the rose was adopted as a symbol of the CF Foundation.