E-Newsletter
Inside CFW E-NEWSLETTER:
A message from CFW President Mitch Messer
Clinical Trial for CF studies
A Courageous New Step: The CF Technology Initiative
The Power of Two
Cystic Fibrosis Association of Ireland announces they will fund two new research projects as of Autumn 2011
5 for 5 Campaign donors in the spotlight!
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CF news around the world
First U.S. Patient Receives Specially Processed Donor Lungs at the University of Maryland
The results of this study, if successful, could significantly expand the number of transplantable lungs available to patients awaiting transplants.
Angry patients win hospital concession
Patients with cystic fibrosis (CF) have vowed to continue their campaign for a stand-alone unit for their needs in the £400 million complex which opens in November.
Good cause for chocolate fish
A trio of schoolchildren have banded together to raise money for cystic fibrosis sufferers The Bayswater Primary School boys raised $271.20 for the Cystic Fibrosis Association of New Zealand by selling chocolate fish to their peers over four days.
Gophers Host Fifth Annual HopeDay Festival
University of Minnesota Intercollegiate Athletics hosted the fifth annual HopeDay Festival on the Bierman Track. Over 1,400 people attended the event on Sep 11th to help members of the HopeKids organization.
Weird rally boasts a big heart
CRAZY colors, outrageous cars and bubbly personalities are the perfect ingredients to make up the Cystic Fibrosis Great Escape.
FROM THE DESK OF THE PRESIDENT, MITCH MESSER
It was a pleasure to welcome Cystic Fibrosis Worldwide (CFW) members to the 2011 Annual Meeting in Hamburg on 8th June. As in previous years we were given great support by the local member organization. This year it was the turn of the German CF Association and we greatly appreciate their support. This year CFW has created an electronic annual report that can be accessed via our website at www.cfww.org.
2010 was a year of consolidation for CFW as we continued to develop the online resources that are available for the CF community throughout the world. The CFW website continues to grow and we have approx. 100,000 visitors per month and the site contains information in 15 languages. We recently posted podcasts of the pre-conference lay day in Hamburg, please visit here and listen to presentations.
CFW has continued to work to share information about CF with people throughout the world and our education program aims to educate and train medical and allied working in areas where little is known about CF. CFW will host a CF conference in Saudi Arabia in December 2011 and in Istanbul, Turkey in 2012.
During 2010 we have also worked to develop the CF Data Network. CFW has 3 main objectives for the network. The first is to increase knowledge about cystic fibrosis and to encourage informed debate by providing all potential users with a convenient gateway to authoritative statistics about cystic fibrosis, the second is to deliver comparable information on the most important indicators at national level and the third is to facilitate collaboration amongst registry experts, for advancing CF data development in an international setting. We launched the CFDN at the 2011 European CF Conference. Please visit the first level of the CFDN here.
There are many challenges facing the CF community throughout the world, however CFW is committed to working with all of its members to try and improve the support people with CF get no matter where they live. Please help us reach people with CF globally and join the 5 for 5 campaign today. To find out more about the 5 for 5 campaign, please click here.
Thank you for your support,
Mitch Messer
President, Cystic Fibrosis Worldwide
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For more information have a look at: www.centerwatch.com To learn more about Clinical Trial Participation go to: www.cff.org
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Two promising projects have been selected to undergo preclinical testing as part of the Cystic Fibrosis Technology Initiative (CFTI). The CFTI provides a bold step towards meeting the needs of the Canadian cystic fibrosis (CF) research community in the area of drug development through a unique collaboration between Cystic Fibrosis Canada, the University of British Columbia (UBC), and The Centre for Drug Research and Development (CDRD). |
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Announcing the "The Power Of Two," a feature documentary film about cystic fibrosis (CF) and lung transplantation in the U.S. and Japan that tells the story of two lives, two cultures and two new chances of life. Click here for more information.
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• The role of mucus and mucins in mediating Pseudomonas aeruginosa colonisation of the cystic fibrosis lung • National Prevalence of Depression and Anxiety in Patients with Cystic Fibrosis and Parents: Impact on Health and Quality of Life More details on projects will be available in their website and newsletter
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A special thanks goes out to all those people who have joined the 5 for 5 Campaign and helped people with CF around the globe. Your $5 has made a world of difference! Leah Buckley • Mauricio Jorge Correa • Joel Schaeche-Odine from FACFA • Mary Bellah • Brandy Kakowski • Adelle Smith • Elle Whitlock • Kristina Vatcher • Lisette Crespo • Michelle Koevoets • Luke Aram from aecom • Mitchell Seth from Mungkorn Mai • Cassandra Bell Schaeche-Odine from SHM • Jeslyn Schaeche-Odine from TEAM JOEL BOY • Mary Worcester • Karen Childs from The Pickle Factory • Joel Boy Schaeche-Odine • Cindee Case • Nicole Frank • Lori Petoske • Lillian Smith • Katrina Stogner • Sarah Sampson • Justin Riseley • Cassandra Fiorentino • Ana Stenzel • Beau Bedelph from B.M. BEDELPH • Evie Lea from TEAM JOEL BOY • Noeleen Trueman • Robert Derr from Pennsylvania Cystic Fibrosis, Inc. • Susan McGregor • Figen Usaklioglu • Lee Schaeche-Odine from FACF • Maximo Gomez-Berard • Giancarlo Colacioppo • Nikki Engle • Katya FitzGerald • Steve Robins from Spark Healthcare • John Di Re • Tracy Sutton • Jessica Bensley • Denise Patrick • William Weinstein • Carroll Jenkins from Cystic Fibrosis Research, Inc. • Margaret Brennan • Mitchell Messer • Christine Noke • ARISTOTELIS KONSTANTAKOPOULOS from SYSCODE SA |
