CFRI produces educational events that update the CF community with new information and support patients and caregivers with practical advice on maintaining optimal health with cystic fibrosis.
CFRI’s National Family Cystic Fibrosis Education Conference is held each summer in Redwood City, California. Our conference brings together adults with cystic fibrosis, caregivers, experts and researchers for three days where a variety of cystic fibrosis topics are explored through presentations, panel discussions and support groups. It is an interactive and informative experience for all participants.
Our Teen and Adult Retreat is for those with cystic fibrosis and significant supporters is held each August in Menlo Park, California. The program includes lectures, rap sessions, physical activities, arts & crafts and fun in a safe environment.
CF Discovery Series
The CF Discovery SeriesTM is an informative and engaging program designed to educate and uplift those with cystic fibrosis. Through interactive presentations with experts in the field, those living with cystic fibrosis gain information in a setting which encourages camaraderie and community. You can attend these events in person. Guests attending in person must follow CFRI's Infection Control Policy. You can also view presentations and ask your questions online via CFRIlive! To watch presentations online, please go to the following link: http://www.ustream.tv/channel/cfri-live-cf-discovery-series.
General Membership Meeting
Our annual General Membership Meeting, held in May each year, provides the opportunity for members to participate in CFRI business planning and to benefit from educational and topical speakers. These presentations cover a wide range of diverse topics which include: medical and pipeline updates, the genetics of cystic fibrosis, insurance issues and special needs trusts. To view this year's presentation, click here.
CFRI regularly participates in education days at other institutions. We alert our readers to local and national events that are of educational value for our cystic fibrosis community.
Questions? Please contact us: cfri@CFRI.org or 650.404.9975.
For the CF Journey
Retreat was an eye-opening experience. I felt an instant trust as I joined the group. Suddenly I was in a world where it was normal to sleep in, take pills before meals, check blood sugars, make time to do treatments, cough, etc. No one stopped and stared. No one asked questions. What a relief it was to not have to explain.
The events at Retreat were fun, including wiffleball, volleyball, U-jams and paddling. Everyone was able to adapt each activity without feeling judged or defeated, and I enjoyed every endeavor I attempted. I also really appreciated the formal talks at Retreat. I learned more about sputum cultures and the lab, CF medications, exercise tips, and CF nutrition. In the small group setting, these talks gave a rare opportunity to ask questions and really get to know our experts. Our support groups, called “raps,” were a rare chance to hear how others fighting CF cope, survive, and triumph. I must add that my fears of cross-infection were quickly assuaged, based on CFRI’s stringent protocols.
It is difficult to capture with words the relief that this environment brought me. In this short week, I truly believe I made friends for a lifetime, and will never have to wonder where to find someone who truly understands.Kristina Benson
Adult with CF