ANNOUNCEMENTS

Calling all filmmakers…

Share YOUR story with the CF community!
If you’ve seen Becoming Christopher, you understand the main character Christopher Morgan’s love for film. His self-reflective video diary helps him with his transition from pediatric to adult care. It helps to talk it out—even to your video camera!
Becoming [Me], a Novartis-sponsored amateur filmmaker’s contest, invites people with cystic fibrosis to submit short videos focusing on their stories. Maybe it’s a story of transition or a story about dealing with treatments, hobbies, even family and friends. Maybe it’s funny; maybe not. It can even be an animation!

The contest will be open throughout the month of August.
Novartis encourages CF care teams to invite people living with CF to create and submit their own personal videos.  By participating, they will be contributing to the important body of public knowledge on CF, inspiring their peers AND they could win a great prize!
For official contest rules and movie making tips please visit www.CFvoice.com

Volunteers Needed For Studies at NIH

The Pulmonary-Critical Care Medicine Branch of the Department of Health & Human Services, National Institutes of Health, National Heart, Lung, and Blood Institute (NIH), in Bethesda, Maryland is conducting a research study to evaluate the role of bacterial products involved in lung disease in cystic fibrosis. We are looking for individuals with cystic fibrosis and Pseudomonas aeruginosa. The participants will be seen at the NIH. They will have blood drawn (around 2 tablespoons) and also have a sputum sample collected. The participants with CF will be paid $50.00 for taking part in this study. We will pay for the transportation of patients who do not live in the local area. If you have CF, are at least 18 years old, have Pseudomonas aeruginosa and are interested in more information about this study, please call us collect at (301) 496-3632 or send e-mail to: barnesp@nih.gov.

A research study of hereditary factors associated with cystic fibrosis and other lung diseases is being conducted at the Department of Health & Human Services, National Institutes of Health (NIH), National Heart, Lung, and Blood Institute in Bethesda, Maryland. Participants will be admitted for an overnight stay at the NIH to have blood drawn, a PFT, chest x-rays, and EKG. Assistance with travel costs as well as a $150 stipend will be provided. If you have CF, are 18 years of age or older, and are interested in participating in this study, please call us collect at (301) 496-3632, or send e-mail to: barnesp@nih.gov.

RESEARCH STUDY
Are you 18 years of age and over and have CF? 

If so, you are invited to complete an internet-based questionnaire designed specifically for adults with CF.  (Name of CF organization) has kindly agreed to make a link available to the study website for participants to complete a research questionnaire on line.  Participation is anonymous with no individual identification being requested.  Only group results will be reported and your confidentiality is assured.   

Interested? Please read on. 
Maureen Pianta, a Doctoral student in Counselling Psychology is conducting a study with adults who have CF on the types of inner resources they use and which they perceive to impact on their psychological well-being and life satisfaction.  The study is under the supervision of Dr Bruce Findlay in the Department of Psychology at Swinburne University of Technology, Victoria, Australia. 

The views of adults with CF themselves are of particular interest in this study.  Your participation may give you an opportunity to reflect on the various aspects of your life and express your own personal views about the particular resources and emotional supports upon which you rely for psychological well-being and life satisfaction. 

Not only will the overall results add to the scientifically based evidence for future support of adults with CF, in particular, the conclusions reached as a result of this study may be useful in providing increased understandings for counsellors who provide services to adults with CF.

Here is your opportunity to have your say.
The questionnaire will take approximately 30-40 minutes of your time and is comprised of mostly multiple-choice questions.  The questionnaire can be accessed on the internet via the link on your CF Association website or at the following Swinburne research website address:

http://www.media.swin.edu.au/surveyor/survey.asp?s=01223081005014215038

All adults with CF are eligible to participate and
your completion of the questionnaire would be
greatly welcomed.