Every Year, One Step Closer to a Cure
Margarete Cassalina has helped raise millions of dollars for the Cystic Fibrosis Foundation through public speaking engagements, chairing events, and volunteering her time. Since her son Eric was born in 1991, she has witnessed great strides in the fields of medical research and pharmaceutical development.
Currently, there is no “cure” for patients diagnosed with CF, however, with consistent and persistent advocacy, awareness-building, and fundraising to support drug development and research, every year offers more treatment options and opportunities than the last.
What is Cystic Fibrosis (CF)?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of approximately 30,000 children and adults in the United States and 70,000 worldwide.
A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1930s, when the disease was first identified, few children with cystic fibrosis lived to attend elementary school.
Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
People with CF can have a variety of symptoms, including:
- very salty-tasting skin;
- persistent coughing, at times with phlegm;
- frequent lung infections;
- wheezing or shortness of breath;
- poor growth/weight gain in spite of a good appetite; and
- frequent greasy, bulky stools or difficulty in bowel movements.
Today, close to 1,000 new cases of cystic fibrosis are diagnosed each year. With more than 70% of patients being diagnosed by age two. Thanks to medical research and pharmaceutical advancements, more than 50% of the CF patient population is 18 years of age or older, and the predicted median age of survival is in the early 40s.
Eric, now 26 years old, takes 70 pills a day to fight off the symptoms of cystic fibrosis, digest his food and prevent lung infections. He also spends two hours each day inhaling medication through a nebulizer to prevent the accumulation of excess mucus in his lungs.
Click to hear Margarete talk about being a mother to children with cystic fibrosis. Audio from a New York Times interview published December 16, 2010.