Cystic Fibrosis | Newsletter | CysticFibrosis.com

Happy Valentine's Day!

Dr. Atul Gawande, author of “Better: A Surgeon’s Notes on Performance”, explains how a doctor can be positive deviant:
Ask an unscripted question.
Don't complain.
Count something.
Write something.
Change.

These five positive deviant behaviors are evident within our e-patient community at CysticFibrosis.com:

Ask an unscripted question. CF is so very complex. Our 190,000+ unscripted messages are examples of how we are searching for answers; we are always asking new questions and inventing ways to ask new questions.

Don't complain. This is easier said than done. With 6000+ blog entries, we have found a perfect outlet for our personal triumphs, trials and tribulations.

Count something. We are always counting and measuring; the components for research and our health management.

Write something. We have so many to creatively share our stories. Journaling, photos, scrapbooking, videoing, art, and poetry are examples of mediums for expression. Storytelling, sharing thoughts, and inspiring others have proven some of the best therapies for managing CF.

Change. Those who visit CysticFibrosis.com regularly often tell us they are more compliant with their medications, have better questions for their doctors, and become active members; knowing they can be agents of change for others.

We have so many positive deviants at CysticFibrosis.com. If each of us take the positive deviant challenge to heart, together, we will make a considerable difference in cystic fibrosis health care.

Best wishes for health in 2008.

Jeanne Barnett, Founder
CysticFibrosis.com - since 1996

Meet Andrei Filipovich, Senior IT Developer, CysticFibrosis.com

Andrei joins us from New Jersey Institute of Technology. His expertise is programming, development and database management.

Andrei has begun the undertaking of the CysticFibrosis.com portal upgrade and update. His first accomplishment is the functional redesign of the Photo Gallery.

Stay tuned, Andrei is working on many new site features. We're thrilled to have him on board!

CysticFibrosis.com’s Interactive Photo Gallery

Visit our new and improved photo gallery. Meet new members, make friends and share your stories.

New features include improved functionality, it’s user friendly and interactive. Enjoy easy uploading directly from your computer; it’s that simple!

Log in to CysticFibrosis.com and upload your photos, add comments, use tagging and keywords.

Express. Share. Inspire.

The Latest CF Tube Videos


Our CF Battle	Bobby's Enzymes	My 1st Vest

Visit the CF Tube. Upload Your Videos Today.

Watch Jerry's Video
The Boomer Esiason's Jerry Cahill, 51 w/CF

Jerry Demonstrates Just How Important
Exercise is to Quality of Life

"Do not let CF stop you...just get out there and live life to the fullest!"

The BEF SACKS FOR CF Scholarship Announces 2007 Winners

Sacks for CF was started by the Boomer Esiason Foundation in order to grant scholarships to people with cystic fibrosis.

Whenever a quarterback was "sacked" during the 2007 NFL season, $1000 was allocated to the BEF Scholarship Grant Program.

The Boomer Esiason Foundation’s 15th Annual
Booming Celebration
March 8, 2008
The Waldorf Astoria Hotel
New York, New York

CFRI 2008 Year Ahead

CFRI's 21st Annual Education Conference
"Living a Medical Miracle: CF Today and Tomorrow" - August 1-3, 2008 at the Sofitel San Francisco Bay.
CFRI's Annual Teen & Adult Day Retreat "Club Med" - Vallombrosa Conference Center, Menlo Park, CA - August 3-8, 2008.
CFRI's Annual Golf Tournament - August 4, 2008 at Cinnabar Hills Golf Course, San Jose, CA.

The CFRI Fall Newsletter contains rich articles and highlights of the 21st Annual Education Conference & Retreat, overviews of CFRI supported research projects, introductions to innovative programs and a host of exciting reading.

Visit the CFRI PDF Web Resources:

Cystic Fibrosis Website Guide

Cystic Fibrosis in the Classroom