We really missed you at the CFRI retreat this year! And we are working HARD to get you back!!! As you know, at the last minute, we had to cancel having kids at the retreat because we were seriously concerned about your safety. We thought there might be a dangerous and contagious bacteria going around, and we just didn't know who might have been exposed to it. We found out later it was harmless. But we no longer felt that all of the hospitals, clinics and labs were following the same guidelines to protect against cross infection. We were worried someone might unintentionally bring a bad bacteria to retreat. So we limited the retreat to adults only and dedicated the entire week to examining the problems.
We're very happy with what we accomplished. To keep the retreat a safe place for you, we decided to do all we could to ensure that CF centers, laboratories, clinics and hospitals have strict and consistent standards for cross-infection control. With CFRI's support, we outlined our needs. We formed task forces consisting of volunteers, including adults with CF, to write to the CF Centers. Our letter, written by virtually everyone at the retreat, is called "CFRI Wish List For Cross-Infection Control." It suggests specific cross-infection procedures as they pertain to clinic visits, hospital stays, lab cultures, and universal standards. Dr. Meg DeLano spoke about it during the CFRI Conference that took place after retreat, and many, many people signed their names to it. You can get a copy of the document through CFRI.
We also wrote a "Vision Statement," explaining why the Family Retreat is so important to everyone, especially you kids. At the Conference, people from five CF camps and retreats, including ours, formed an "Association of CF Activities," to generate guidelines for CF camps, conferences and gatherings throughout the country. We hope to wind up with a strong medical protocol and cross-infection procedure that has our high standards and will be used as a guideline for anyone hosting a gathering involving people with CF.
CFRI is very supportive of the retreat, and we all want you to return as soon as we're satisfied that things are safe. Encouraging the CF community to adopt these standards will realistically take at least a year. Then, the retreat takes almost a year to plan. The bottom line is that we're hoping to see you back at retreat in 1999. That's a long time, but your health is more important than anything else. We miss you, and we promise not to give up on retreat!!! We'll keep you posted on how things are going. In the meantime, stay as healthy and as happy as you can. And always remember this: WE LOVE YOU!!!
Signed, Everyone at CFRI and everyone on the Retreat and Wish List Committees
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