Welcome to the Web site of the
National Cystic Fibrosis Awareness Committee.






The National Cystic Fibrosis Awareness Committee (NCFAC) exists to serve as an instrument for advancing the public's awareness of the genetic disease, Cystic Fibrosis.
Our mission is to bring Cystic Fibrosis (CF) to the forefront by:
Establishing and promoting an annual Cystic Fibrosis Awareness Week in the United States;

Holding campaigns and promotions in which to educate the public and heighten awareness of CF;

Showing support for the individuals and their families who struggle with this disease.

The Objective of the National Cystic Fibrosis Awareness Committee

Our objective is a personal one. The committee, as patients with Cystic Fibrosis and their family members, hold to the hope that through heightened awareness, the quality of life for people with this disease will be improved and the lives even lengthened.

We believe this aim will be realized through efforts of us as individuals and communities throughout the nation.






Letter from the Chairperson

In 1998, a teenager with CF asked her friends on Cystic-L (an email list for Cystic Fibrosis), "Why don´t we have a day or week for CF awareness like we do for AIDS, cancer and many other conditions?"

Sounded like a great idea (thanks, April!) so a group of parents of kids with CF and adults with CF joined together to form The National Cystic Fibrosis Awareness Committee (NCFAC) and began a journey which has brought us here. This year, we have Senator Ben Nighthorse Campbell of Colorado and his energetic staff (thanks, Vivian!) to thank (again) for their tireless efforts in establishing an official Awareness Week (October 13 - 19) in the U.S.

View Resolution §270

I urge anyone visiting this site to sign in to the message board and let us meet you. I also hope that each October you will find an awareness activity to participate in and help dispel the darkness and improve the public´s awareness about CF. By joining the committee you are under no obligation to participate in any events. You are simply added to the list of members and sent updates on important issues for people with Cystic Fibrosis and their families and friends.

Thank you so much for visiting our site and for your interest in our group. We are sorry that it is a devastating disease that has brought us together, but grateful to be here together and to have such wonderful companions along our journey.


Lenora Degen
NCFAC Chariperson 2002
(Parent of 2 sons, one with CF)

Read Our Family´s Story in a letter to our Senators

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