Cystic Fibrosis (CF) is a genetic disease that currently has no cure.
Life expectancy is increasing and now many people are living into their 40s and beyond. CF is a very complex disease that manifests with a thick sticky mucus in the respiratory and digestive systems and throughout the body. This often leads to infections in the upper respiratory system, lungs and digestive system. Researchers have identified more than 1,700 mutations of the CF gene.
The CF Foundation has provided funding for the therapeutic pipeline for most of the drugs that are used to treat CF. The CF Foundation was the first health organization to fund the development of a family of drugs that treat this genetic disease at the molecular level. Currently CFF is adding new drugs to the therapeutic pipeline continuously. Kay James, Executive Director of the Cystic Fibrosis Foundation in Raleigh, explains:
This coming Sunday, February 25, PRA is a corporate table sponsor for CFF’s “An Evening With Master Chefs” event at the Durham Convention Center to benefit cystic fibrosis research.
What is the Cystic Fibrosis Foundation’s mission?
The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care.
How do you help those with CF and their families?
The Cystic Fibrosis Foundation helps people living with CF and their families in many ways. In addition to supporting the local Cystic Fibrosis Care Centers that provide specialized care for those living with CF, the Foundation provides links to a powerful program COMPASS that helps people navigate program services including legal, insurance, medical assistance, and how to work with schools and the workplace to better serve our population. The CF Foundation provides grants for research for drug development to care for this complex disease. In North Carolina our care centers receive approximately $5,000,000 per year to support research and care of the 905 people living with CF.
What attracted you to the organization?
I was attracted to the CF Foundation for several reasons. CF is a terrible disease that needs to be cured and the Foundation is on the pathway of achieving that goal within our lifetime. The CF Foundation is in the business of finding a control and ultimately a cure for CF. It operates in a highly efficient and effective manner so that the investments in drug development and phyco-social supports for this isolating disease. The developments in research are impacting some other genetic diseases now. I know that the CF Foundation will one day announce a cure for CF. I am honored to be a part of saving and enhancing the quality of life for people living with CF. And I encourage you to join us.
What is some of the latest research that CFF is supporting?
Current research consists of mucus thinning, nutritionals, anti-inflammatory drugs, antibiotics, and modulators that treat the disease at the cellular level. We have ground breaking research taking place in the RTP area with companies working in conjunction with the care centers at UNC, Duke and Wake Forest. Our care centers and companies working on controlling CF are among the top CF companies with promising research in the world.
Where can people find more information about CF and possible clinical studies?
If you want to know about CF and drug development or a clinical trial for a certain CF gene mutation type, your best source is www.cff.org. You can find a clinical trial to discuss with your doctor to see what best suits you.
What are you most excited about that is on the horizon for CF treatment?
I am most excited about the array of drug development, gene editing and mental health needs that are being addressed. In this pipeline of drug development, I can witness firsthand the importance of clinical trials in helping to get lifesaving drugs and therapies to the public. CF is a terrible disease where the burden of care is difficult that includes hospital stays, twice daily treatments and 25 to 40 pills per day. With the development of every treatment or drug development we are getting closer to controlling and ultimately curing CF.
What is the Master Chef’s event and how are the proceeds used?
Master Chefs is our Top Tier Gala that brings the top chefs together and provide the delicious 5 course dinner as they cook together for a unique dinner that is pared with the perfect wines for this event. It is characterized by having simply the best of entertainment by the Gravy Boys, notable Keynote speakers, Care Center Honorees and the best live and silent auctions. More than 400 of the Triangle’s business leaders, researchers and medical team members, CF families and friends will gather to have fun and raise funds to help cure CF. Master Chefs takes place at the Durham Convention Center on February 25 at 5:00 pm. If you are interested in participating as a guest or volunteer contact the Carolinas Raleigh Chapter of the Cystic Fibrosis Foundation at 919-845-2155.