Why We Do It

The CFLF goal is to help all people with CF learn to live STRONGER LONGER, or STROLO!

 

A cure for cystic fibrosis is closer than ever, and we share in desire to help those faced with the disease in living long enough to see a cure in their lifetime!

 

The experience of living with cystic fibrosis is markedly different today than it was decades ago. Thanks to the discovery of the CF gene, the availability of effective drug therapies and advances in technology, the 30,000 Americans who deal with the disease day in and day out are living longer and fuller lives.

 

A preventative and proactive approach to living with CF is increasingly needed as the population of CF patients living into adulthood continues to grow. In the United States, 43% of all CF patients are over the age of 18 and the mean survival age is currently 36.5 years, increased from two years old before the mid-1960's.

 

Nonetheless, cystic fibrosis remains a chronic life threatening disease. CFLF strives to address the need to supplement traditional medical treatment for CF with ongoing recreational exercise. Exercise has become a medical necessity for people with cystic fibrosis, but incurs associated costs not typically covered by health insurance plans.

 

Activity camps for cystic fibrosis no longer exist due to development of drug-resistant bacteria and the threat of patient infection. Strict infection control is why CFLF is striving to promote active and healthy lifestyles for people with cystic fibrosis on an individualized basis with the involvement of a non-CF mentor.

 

CFLF individualized Recreation Grants, coupled with mentoring or peer support, offer exercise as a supplemental means of airway clearance and expansion. Additional benefits from the exercise and mentor support address the psychological and social struggles that can contribute to a patient's non-compliance of medications and/or respiratory physical therapy.

 

This financial and personal support provides incentive and motivation for the development of active and healthy lifestyles. The psychological and social aspects of dealing with chronic disease can thereby transform a hindrance into a motivation.

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