CFW News - July 2011

E-Newsletter

INFORMED

INSPIRED

INVOLVED

Inside CFW E-NEWSLETTER:

A message from CFW President Mitch Messer

The Great Escape

Crucial gene therapy trial

Cystic Fibrosis reaches the movie screen (in Dutch)

Mucofang International Project

Mobilizing Young People Through Texting: R U Ready?

Donor Spotlight: Vertex and Roche

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CF news around the world

Cystic Fibrosis drug offers fresh hope to sufferers
An international team co-led by scientists at Queen's University, Belfast, has developed a new drug for Cystic Fibrosis sufferers.

Gift of life in stunning tale of survival for Greendale teen
"I owe my life to them. It would be cool to meet them, I want to say thank you and get to know about the person whose lungs I have."

Mariners hit links to fight cystic fibrosis. 26th annual golf tournament raises funds to help with research
The 26th annual Mariners Care Golf Tournament to benefit the Cystic Fibrosis Foundation was held on June 30th, with former and current Mariners for one cause: to raise money for cystic fibrosis research.

Researchers at UCLA discover new airway stem cell
The new stem cell participates in the repair of the lungs' large airways, which play a vital role in protecting the body from infectious agents and toxins in the environment.

Teens Travel to Washington, D.C., to Speak Out for Cystic Fibrosis
Nearly 50 teens gathered in Washington, D.C., to advocate on behalf of their brothers, sisters, parents and cousins with cystic fibrosis at the CFF's third annual Teen Advocacy Day.

GREETINGS FROM CFW PRESIDENT, MITCH MESSER

In my travels around the world, I've seen that people with CF are being born every day but access to health care and medication for CF are not available to everyone. This is true for the patients born in India all the way to Latin America and it's why CF Worldwide is focusing on developing the spread of Medical and Allied Health education and awareness about Cystic Fibrosis globally.

Just five years ago, patients in Armenia had never been seen by a CF Nutritionist or Physiotherapist and their parents had little access to knowledge or understanding about taking care of a CF patient. But now, through the work of CF Worldwide and our member organization in Armenia, there is a CF Center, trained medical professionals, necessary equipment and continued progress being achieved. Through combined efforts of the CF Worldwide member countries, partners and stakeholders, we reached out and made a difference.

This December in Saudi Arabia, CF Worldwide will be hosting a regional conference offering education for Medical and Allied Health professionals caring for CF patients. We will record the presentations and host them as podcasts on the CF Worldwide website and iTunes. In Collaboration with the CF Spanish Association, we will add subtitles in Spanish, reaching people living in Latin America and Europe.

From developing a CF Center in Yerevan Armenia, to spreading education in the Middle East and Latin America, CF Worldwide is creating a chance for people born with CF to live longer and with a better quality of life.

Sincerely,
Mitch Messer
President CF Worldwide

The Great Escape: The Great Escape car rally supporting Cystic Fibrosis is without a doubt the best car rally in Australia!

Cystic Fibrosis reaches the movie screen (in Dutch)
On July 07th, the movie ADEM (breath in Dutch) had its debut in the Dutch movie theaters. ADEM is an impressive and romantic story about two teenagers with CF and the very different ways they see life. The movie is about the choices you make while waiting for the lung transplantation. ADEM was a success in Belgium and won various international prizes. To find out more, visit here.

MucoFong International Project (MFIP)
Proposal to organize an international study with the purpose of developing a standardized approach to the mycological culture of respiratory samples from CF patients.

Crucial gene therapy trial
The UK CF Gene Therapy Consortium have confirmed that they will start the multi-dose clinical trial for CF gene therapy in Spring 2012 if the costs of £6million are raised.

Mobilizing Young People Through Texting: R U Ready?
A simple text message, "Santa Cause says run a food drive in ur community 4 Tackle Hunger," recently received a huge response from teenage volunteers and inspired a nonprofit to turn to mobile technology to reengage young people. A major foundation shared their vision and gave a significant gift to show their support.

CF Worldwide thanks Roche and Vertex for their recent support of our activities at the European CF Conference in Hamburg, Germany.

Both Roche and Vertex also supported the recording of the Lay pre-conference day now available via podcasts online at www.cfww.org/podcasts. To find out more about Roche please visit their website and learn more about exciting new developments at Vertex here.