CF Discovery Series
"Exploring Health Outcomes in Hispanic Patients with CF in California"
Tuesday, September 9, 2014
6:00 p.m. - 7:30 p.m. PST
Guest Speaker: MyMy Buu, MD
Dr. Buu will discuss how she is improving the understanding of health status and outcomes in Hispanic patients with CF.
After Dr. Buu's presentation, Marianela Fajardo Gonzales will share her experiences as a mother of two children with CF and her advocacy for Spanish-speaking families with CF.
To watch this presentation, click here or go to http://www.ustream.tv/channel/cfri-live-cf-discovery-series
CFRI's Wine for a Cure
|The Purple Orchid Wine Country Resort & Spa |
Sunday, October 19, 2014
3:00 p.m. - 4:00 p.m. ~ VIP Reception
4:00 p.m. - 7:00 p.m. ~ The Event
Join us at Wine for a Cure on Sunday, October 19 (3:00 p.m.- 7:00 p.m.) at The Purple Orchid Wine Country Resort & Spa. The setting is breathtaking. The food, prepared by On the Vine, is delectable. The wines created and poured by notable vintners, including Steven Kent, are extraordinary. In addition to offering bountiful hors’ d’oeuvres, wine tasting, dinner, music, and the exciting auction, CFRI will honor Dr. Carlos Milla, Director of the Pediatric CF Center at Lucile Packard Children's Hospital, with the Caregiver of the Year Award. Register now!
CFRI 27th National Cystic Fibrosis
Family Education Conference
|August 1 - August 3, 2014
Sofitel San Francisco Bay
Redwood City, CA
CFRI's 27th National Cystic Fibrosis Family Education Conference brings together experts in the field of cystic fibrosis (CF) to provide the latest updates in research and care to our diverse CF community.
For details, and to register, click here.
To hear why people attend CFRI's conference every year, click here.
To watch a past conference video clip by CFVoice, click here.
|CFRI's Teen and Adult Retreat
July 27 - August 1, 2014
Vallombrosa Center, Menlo Park, CA
CFRI's Annual Teen and Adult Retreat provides a safe and welcoming environment aimed at enhancing positive coping skills, social support and education for people who share common experiences with CF. Adults and teens 15 years and older with cystic fibrosis, as well as their family members, friends, and health care providers can register.
Activities promoting health include daily exercise, arts and crafts, rap sessions, and educational workshops with guest speakers. Fun group-bonding activities include a talent show, games, and getting to know each other. All people with CF are required to comply with cross-infection behavioral precautions. Participants with CF must obtain a sputum culture before the start of the Retreat.
To register for the Retreat, click here.
To apply for a scholarship, click here.
To make a tax-deductible donation to support the Retreat, click here.
To get a personal inside look about what the Retreat offers, click here.
To watch a video from last year's Retreat, click here.
To receive updates on Facebook, please email your request to email@example.com.
If you have any questions about these events, contact CFRI at 650.404.9975 or firstname.lastname@example.org.
For the CF Journey
To Kriss's Community,
CFRI is saddened to announce the passing of Kriss Benson, who lost her battle with CF in September. Kriss was a beloved member of our CFRI community; our thoughts are with her husband and family.
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.
Adult with CF