Message From the Executive Director

Spring 1996

During the past few years, CFRI's staff and volunteers have been offering educational support services to adults and children with CF and their families. CFRI provides videotapes (at cost) of important research topics and panel discussions, an annual conference, support groups and a CF Summer Retreat for children and adults with CF and their families. We also provide brochures, newsletters and information on cystic fibrosis. Your donations help to cover the costs of providing these valuable services. I want to take this opportunity to show you firsthand the gratitude our members feel toward the very services your dollars make possible through CFRI. Below are just a few of the many comments that we have received.

I want to thank you directly for the personal and thoughtful messages that you add to the CFRI thank-you letters you send. Your handwritten personal notes are so meaningful to me...I also want to thank you for the excellent article you wrote about your family and son, Carl who has CF. Since I work as a School Psychologist at two elementary schools and one Junior High School, I can relate to and I agree with "discipline with kindness," "actions have consequences" and "causes have effects."
- Steve Holdaway (Uncle of Jeremiah and Joshua who have CF).

Your information about CF was an eye opener. I admire and envy your openness, foresight and energy.
- Andree D'Angelo (mother of Lorraine, an adult with CF).

Let me tell you how much people appreciate your including Fiona's name in your handwritten notes on your thank you letters to my friends. Several of them made a point to call me to report their pleasure.
- Florence Sara Mischel (grandmother of Fiona who has CF).

Thank you for inviting me to the Mother's Day Tea. I am 30 years young and I have CF. Tomorrow I am going in for a necessary "tune up" and I am glad your card came today. I enjoy receiving the CFRI newsletter and I know something wonderful is just beyond the horizon. We will find a control for CF. All over the world, we are pulling together for this. I am glad you did not forget me and invited me to be a part of this crusade.
- Lori Morris (an adult with CF).

Thanks for your handwritten note. Your personal touch does make a difference! I know that Valerie and Bev would want us to continue to support all the rest of the CF kids. Our hearts and prayers are with you all. Please accept this donation in memory of our daughter Bev. It helps to see her name once in awhile. The void of losing a CF child never disappears for families.
- Jaunita Johnson (mother of Bev Johnson who passed away).

...thank you for the service of providing videotapes of the CFRI meetings. We appreciate having this information without a mid-week, after-work meeting to attend.
- Bob and Gail Wright (Bob, an adult with CF, and his wife, Gail, recently adopted twin sons, Dennis and David.)

We have made your organization known to all of the families in our New Jersey group and we hope they will be in contact with you. Your organization is great and a wonderful source of information. I can't tell you how long I have been looking for a group like yours.
- Carol Russo (mother of a five-year-old son who has CF).

This is just a mild expression of gratitude compared with the deep appreciation we feel inside for all you and CFRI have done for our family. We went through such a tumultuous summer two years ago and were it not for folks like you I doubt we would have endured as well. You have listened so well and given so much to us who were virtual "strangers" to you. Kevin has come a long way and we know a lot of his success is connected to the support that has come from you and others at CFRI.
- Jackie and Craig Burleigh (parents of Kevin, age two, who has CF and is our 1996 Mother's Day Tea poster child.)

I'm thankful that God puts people like you in places people like me need them. You sure gave me the necessary information to talk to Jereme's doctor. You are such a blessing to all of us "CF parents"...
- Jeanette Pierce (mother of Kaeti and Jereme who have CF).

Todd and I wanted to again thank CFRI for the great CF Conference in August. We appreciate all the time and effort that goes into organizing such an event. We learned so much and it was a pleasure to meet everyone... Dr. and Mrs. Todd Primack (parents of Robyn who has CF).

Your newsletter is very much appreciated. We all read it faithfully. We would appreciate any information to help young adults with CF such as health insurance alternatives, support papers, job choices, or videos of young adults with their problems. Terri Harbison (mother of an adult son with CF).

Thank you very much for inviting me to your membership meeting...I was given the chance to increase my knowledge of CF in a way that books cannot teach. The motivation of your members to make life easier for CF patients is wonderful to see. I think the information I gained that night, in conjunction with what I am learning in school, will help me to be a better nurse for those with CF.
- David Olson (student at San Jose State University School of Nursing).

Hope is certainly dear to the hearts of all who live with CF. CFRI is an important factor in bringing the hopes of all of us to reality. Thank you for your mighty efforts on behalf of Ben, Adam and Naomi and all of the others who have this disease. The last newsletter was certainly a gold mine of information.
- Keith and Margaret Lindquist (Uncle and Aunt of Ben, Adam and Naomi who have CF).

We here at CFRI appreciate any and all feedback. It is what keeps us going and helps us to serve you better. In 1995, contributions to CFRI were up 25 percent, our highest revenue ever! Please know that your continued contributions are directly responsible for these programs that people are praising as well as for funding cystic fibrosis research.

We know that being informed about CF is our most powerful tool for meeting the challenges of this disease.

Sincerely, Ann Robinson

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