Message From the Executive Director

Fall 1996

During the past year, CFRI's staff and volunteers have taken great pleasure in offering educational support services to adults and children with cystic fibrosis and their families. These support services, which are designed to help people cope with cystic fibrosis, include an annual CF Conference, the CF Family Retreat, social and fund raising events, newsletters, brochures, and support groups, among others. We also provide informative articles, videotapes and research updates on aspects of cystic fibrosis. In this newsletter you will find information on the 1996 Annual Conference, the 1996 Family Retreat, as well as information on currently funded research into the acidity levels of the CF cells, ways to get emotional support, an article detailing some suggested reading that will help in coping with this disease, and some Good News stories about people challenging themselves to find ways to help bring about a cure to cystic fibrosis.

We here at CFRI continue to receive many appreciative letters which let us know that the information and services that we provide are beneficial to our constituency. We recently heard from Brenda DiGiovanni, an adult with cystic fibrosis:

"I can't begin to thank you enough for the informative packet that you sent me. I am enclosing a completed coupon for a lifetime membership. I had seen mention of CFRI on Cystic-L [(the CF mailing list on the Internet), but one individual in particular] was kind enough to tell me of his attendance at this year's CF Conference and what a wonderful organization you have... I would love to attend your 1997 conference. Again, thank you for the information and for your organization."

And Debbie Williams, grandmother of Konner, aged two and newly diagnosed with cystic fibrosis, wrote in:

"Thank you so much for your support! I am impressed! You have been such a help to me and my daughter! You are a true blessing from God! Enclosed is my membership check and a donation. Thank you for the information. I am looking forward to learning more. I would like the opportunity to get involved, so please let me know how I can help. God bless all of you...."

We are deeply gratified when we receive encouraging news from you, our community. We also appreciate other forms of feedback and suggestions. These comments from you remind us why CFRI exists and that our organization's strength lies in making personal differences in your lives. Your donations have made this strength possible. All of our programs, from funding cystic fibrosis research to all of our educational support services are a direct result of your generosity. Our thanks to all for your courage in confronting the battle against cystic fibrosis.

Ann Robinson

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