Determination and focus powered cystic fibrosis-stricken families to achieve what “Big Pharma” didn’t: Since the inception of the national Cystic Fibrosis Foundation in 1955, research it has funded has resulted in stretching the average life span of individuals suffering from CF from five years to 37. Some live even into their 70s. “It’s an exciting time to be part of the Cystic Fibrosis Foundation,” says Nicole Newhouse, executive director of the Arizona chapter of CFF. “We’re closing in on really having a solid handle on how to have a functional cure.”
In the 1950s, parents whose children were diagnosed with CF — a pulmonary and pancreatic disease — were told to love them but expect to lose them by the time they hit kindergarten, relates Newhouse. A population of approximately 30,000 cases nationally did not draw research interest from the large pharmaceutical companies, she explains. “The parents started raising money to do the research.”
Aiming to raise $100,000, the Arizona chapter will hold its third annual Cycle for Life fundraiser on November 2. Offering a 35-mile and a 65-mile course, starting at the Goodyear Sports Complex, the organization expects more than 200 cyclists to participate. The fun will start with a DJ “to get people pumped up,” and end with lunch and a live band. The routes will wind through Verado and scenic areas of the Sonoran Desert, with uniquely themed rest stops along the way: NASCAR (especially appropriate for the 65-mile course, as it passes by Phoenix International Raceway), baseball, and ParrotHead Paradise (playing Jimmy Buffet songs “Cheeseburger in Paradise” and “Margaritaville,” and manned by volunteers decked out in Hawaiian flowers, serving pickle juice in salt-rimmed shot glasses).
- CFF does not provide care directly, but works with care centers where families get day-to-day support. In Arizona, they are at Phoenix Children’s Hospital and University of Arizona.
- In addition to its primary focus on funding research, CFF provides drug assistance to help patients find the best cost and, in some cases, to help defray the cost, and has a public policy component to help ensure people get the best care even if their insurance does not authorize them to go to Phoenix Children’s Hospital.