In an effort to respond to health and safety concerns from area physicians who treat CF patients attending our CF Camp, the Camp Committee met with Camp Physician Meg DeLano, M.D., and Camp Counseling Director, John Bartelt, Ph.D., who in turn met with several teens and adults with CF as well as several parents of CF youngsters interested in the process of redesigning CF Camp. The most important distinction comes in redesigning and renaming CF Camp to the CF Family Retreat. Camp implies that children and adults with CF will be rooming together and doing treatments in common areas. Despite precautions (screening with sputum cultures for common bacteria colonies, hand washing, etc.), doctors are now advising that all treatments and sleeping take place in separate rooms or tents, and that they are done with people who do not have CF.
The best way that the new Retreat Committee could see to handle these treatments and sleeping arrangements, while still optimizing on the sharing and openness that goes on when these children and adults come together, was to offer a CF Family Retreat. This will also allow us to address issues that may come up for siblings of youngsters with CF as well. Parents of younger children may feel more comfortable knowing they are not too far away (younger children may appreciate this too, especially at night) and they may prefer to oversee the treatments of their youngsters. Parents who do not wish to attend may assign a "guardian" to replace themselves during the retreat; the guardian may be a trusted babysitter, an older cousin, aunt or uncle (these guardians cannot have CF), or an older sibling (in this case, because they already live together, having CF is irrelevant).
The new CF Family Retreat will be held at the Redwood Glen Camp and Conference Center, a beautiful spot in the redwoods in Loma Mar, California, 18 miles south of Half Moon Bay. Because this is the first year we are organizing such a retreat, and because of the lateness of the date, it will be considerably smaller than last year's camp. This year we can only accommodate approximately 40-60 children and adults with CF depending on the configurations with other attendees (who do not have CF). If response is good, we can reserve the whole facility next year and have a much larger gathering. There is also access to tent and RV hook-up sites, so the possibilities are endless.
Because so much is in transition this year, the Retreat Committee has asked that CF children and attending siblings be at least eight years old (this age is a little easier to handle). Any younger children will have to be supervised by mom, dad or the attending adult. The cost will also be slightly higher. The arrival date has been set for Sunday, August 4th at 6 P.M., immediately following the end of the CF Conference. Departure date is Friday, August 9th., so mark your calendars. Keep your eyes on your mailbox: a more informative letter from the Retreat Committee will be forthcoming.
Without a doubt, there will be many feelings of loss as we all attempt to let go of the old Camp. Some teens with CF expressed frustration that parents or siblings would be present. CF Camp was an incredibly special experience and it must feel threatening to have it altered in any way. Keep in mind it is the people gathering and sharing that make the experience what it is. It may also be hard to look ahead and imagine that much good can come from having parents and siblings present. However, separate activities for each of these groups will be planned for at least some of the time, and this should prove very helpful.
Finally, your core group of friends with CF will still have private time together. As sponsors of the CF Family Retreat, CFRI's first priority is to safety of our attendees. We trust you will all try to make the new Retreat all that it can be. Your feedback and support is welcome and essential!
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