Welcome to the web site of the
National Cystic Fibrosis Awareness Committee

NCFAC

The Objective of the National Cystic Fibrosis Awareness Committee

Our objective is a personal one. The committee, as patients with Cystic Fibrosis, their family members, friends and

caregivers, hold to the hope that through heightened awareness, the quality of life for people with this disease will be improved and lives even lengthened.

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

Thank you to all who
share yourselves with us through photographs.

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 so 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. Each year, Senator Ben Nighthorse Campbell of Colorado and his energetic staff (thanks, Vivian!) have worked tirelessly to establish an awareness week...and in 2004, they got us a whole MONTH of awareness (May, 2004)!

We are so very grateful to all the senators who co-sponsored the resolution declaring May as National CF Awareness Month, as well as all the people who wrote and called their senators.

View Resolution §S298
View Presidential Proclamation (2002)

What now? We need to get a Senate Resolution each year, declaring May as CF Awareness Month. You can help by joining the committee and keeping updated on developments of the resolution and contacting your 2 state senators in Washington to encourage them to support the resolution. Then, help get the word out about CF with rose ribbon pins, activity books in school, scouts, church - wherever.

I urge anyone visiting this site to sign in to the message board and let us meet you. I also hope that each May 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.

Sincerely,

Lenora Degen
www.lenoradegen.com
NCFAC Chairperson 2005
(Parent of 2 sons, one with CF)

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