On August 1st, 2009, I took a crew of five to the annual National Cystic Fibrosis (CF) Family Education Conference, hosted by CFRI in Redwood City, CA.
CFRI – Cystic Fibrosis Research Institute – is a community of families, professionals and volunteers committed to funding CF research and improving the quality of life for children and adults who are living with CF. The conference is designed to share updated and current information and features a range of sessions by physicians, scientists, health care professionals and adults who are living with CF.
Notably, Isa serves on the programming and planning committee for this major national event, and Ana was a featured panelist this year.
For our part, it was an incredible and inspiring day!
We interviewed 15+ people, mostly parents of children who are living with CF. The interviews were moving and heart rending (I, myself, was moved to tears several times), and they showed how vitally important it is for families to fight isolation by finding support among other families who are also impacted by the disease.
Story after story revealed how hard it is for families to live and manage with CF. The number of treatments, regimens and medications are dizzying. And, the intensity of each personal story brought home the fact that a feature documentary inspired by The Power of Two is both timely and essential!
One interesting note: At the conference, there is an essential set of rules designed to lessen the risk of cross infection, contamination, and exposure to germs that comes with CF. People abide what is called the “three foot rule,” whereby every effort is made to ensure that people living with CF are not seated near one another. And, there is an unbelievable amount of hand sanitizer available at every turn of the corner.
Finally, our crew was introduced to the very important fact that no one in and around CF ever actually shakes hands. When in doubt, if you say hello at a CF event, greet and gesture “hello” by pointing your elbow.
Special thanks to Carroll Jenkins and David Soohoo from CFRI from giving us such wonderful access to this event! Several of the interviews recorded that day wound up being included in our first video promo as well.
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