CF Camps

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One person said: Yes, the Cystic Fibrosis Foundation withdrew their support of CF camps several years ago due to concern of spreading infections. Some however are of the opinion that the foundation stands to profit financially by not supporting camps – that money normally donated to camps would now be donated to the CF foundation. Just something to think about.

Someone had mentioned that they sent their little girl to a girl scout camp. That is wonderful, but it shouldn’t be thought of as a fair replacement to CF camp. A child would receive different types of knowledge and support from each camp. I firmly believe that the CF camp experience has extremely positive results. The benefits a pre-teen or adolescent gains from being around his/her peers is just unmeasurable. I learned so much about how to take care of myself, and how to deal with the disease. More important than that, seeing the older CF’ers gave me hope and inspiration, and being around of them made me feel “normal” for a change. The friendships I have made through these camps mean the world to me.

Sunny Shores Sea & Teen Camp

Although there are very few camps left, there is one in Key West supported through Florida Cystic Fibrosis. It is a non-profit, independant organization that holds 2 camp sessions each year in the Florida Keys and is free for children with cystic fibrosis; it has been around for nearly 20 years (as of 1996). Our campers stay in a really nice marina.. motel like rooms.. two to a room and not cooped up on top of each other. They probably have less chance of getting infections there than in a hospital!!! Almost all activities are held outdoors or in very large open buildings. The fun and socializing is so meaningful and a real stress reducer.

1996 Camp Dates: Junior Camp (ages 6-12) June 22-July 30;

Teen Camp (ages 13-17) July 13-July 20

Campers and Staff must be free of B. Cepecia and M.R.S.A.; sputum culture is required to be sent to validate cultures. Those interested in volunteering or attending call Nurse Sue Urban, one of the founding trustees, at 407-668-8422 (after 8 pm Eastern Time is the best time). Dr. Robert Mckey from the University of Miami is the medical director as well as one of the founders.

Camp Funshine

We are starting a new Cystic Fibrosis camp called Camp Funshine for children with CF. The summer of 1996 will be our first year of the week long camp. We are high in spirits, but low in funds. If you are interested or know of anyone who would be interested in donating money please contact us at:

Camp Funshine Foundation P.O. Box 630662

Houston, Texas 77263-0662

Camp Funshine reportedly has adopted strict infection control guidelines. These include observing proper hygiene and pre-camp screening of campers and cf counselors to prevent contagious organisms from being introduced at camp. Attendance is not allowed by anyone who has never acquired Pseudomonas aeruginosa, or by anyone who has a highly contagious type of lung infection such as Burkolderia Cepcia or M.R.S.A.

Also, we invite any questions, comments, and suggestions; please address them to Jeff Brown. Our e-mail address is: [email protected]

They are having CF Camp here in Southern CA, however we have been informed that 1996 will be the last year of camp.( :(, after 25 years!) Anyway, if anyone lives in So. CA or nearby, and is interested, the address is P.O. Box 28914, Santa Ana, CA 92799-8914 Phone # Andrea Sams: (909) 277-3034 or Gordon Owens (714)538-9474. Call for registration forms and more info. All pwcf must present a form signed by a physician proving that the person has not tested positive for cepacia and/or antibiotic multiresistant organisms. The sputum test must be performed no more than 3 months prior to camp. The camp will be held Aug 11-17, at the Lazy W Ranch in San Juan Capistrano.

CFRI CF Camp

Ann Robinson, the Executive Director of CFRI replied to a query in May, 1996 about the existence of a CFRI-sponsored camp: “CFRI has a CF Family Retreat from August 4-9, 1996 that has replaced our CF Camp. We have not advertised the retreat because it is full. Next year we hope to increase the space at the retreat facility that is near the Pacific Ocean, south of Half Moon Bay off Highway 1”

Camp Onkoi Benek

Camp Onkoi Benek (Indian phrase = “To Conquer Tomorrow”) was a CF summer camp in Battle Creek, Michigan; the camp had its 25th anniversary in 1996. The camp was operated by MPDCI (Michigan Pulmonary Disease Camp Inc.). In 1997 the Board of Directors voted to put the camp on hold indefinitely due to infection issues. While there are no plans for a retreat in 2001, there are plans for other day outings as well as events for adults with CF. Please visit the website for more information.

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