Friday, June 12, 2009

CF in the News!

I'm going to copy the e-mail I received from a memeber of Olivia's Care Team.

What a week for CF in the media! Take a few minutes and visit the web-sites below.

1. The New York Times - "Patient voices: cystic fibrosis." (June 10, 2009)
Less than 20 years ago the median life span for people with cystic fibrosis was 29. Today, with new treatments and earlier diagnosis, those with the inherited disorder are living longer, more fulfilling lives. But with complicated, time-consuming treatments and frequent lung infections, life with cystic fibrosis can be difficult. Six men and women speak about their experiences.

2. The New York Times Blog by Tara Parker Pope - "The voices of cystic fibrosis." (June 11, 2009)
Tara Parker Pope taps into the "Patient voices" series in her health blog, called "Well." The blog includes nice, big photos and excerpts of the main NYT piece.

3. Globe Newswire - "Representative from the Cystic Fibrosis Foundation to ring the NASDAQ stock market closing bell." (June 10, 2009)
James Shuler, representing The Cystic Fibrosis Foundation, will preside over the NASDAQ closing bell on Thursday, June 11, 2009.

4. Petaluma Argus-Courier (CA) - "Hoping to find a cure for cystic fibrosis." (June 10, 2009)
Helen Dias has been waiting to hear the words, "We've found a cure," ever since her daughter, Diane, was diagnosed with cystic fibrosis more than 20 years ago. Though Diane has since died from cystic fibrosis, the wait for Dias grows even more urgent as her youngest daughter, Amanda, is also battling the deadly disease. "It just hit me on Amanda's 28th birthday that although she's fairly healthy, she's too close for comfort to that average life expectancy for people with CF," says Dias. "That's what made me decide to call the Cystic Fibrosis Foundation to see if there was anything I could do to help raise money to find a cure." Along with her daughter, Dias is hosting the third annual A Night of Wine and 65 Roses.

5. Reuters News Service - "Vertex sees profit soon after hep C drug launch-CEO" (June 10, 2009)
Vertex Pharmaceuticals Inc's new CEO said the biotechnology company would become profitable shortly after it begins selling its high profile hepatitis C drug, likely in early 2011. Matthew Emmens, who replaced Joshua Boger, stressed that Vertex, unlike some biotech companies, would not be a one-drug outfit. He said the company was making great strides in developing its experimental cystic fibrosis treatment.


CFMama said...

Thanks for the links!! I will enjoy spending "nap time" reading!!

Lovin Lane said...

Hey dont worry about rambling, I take in all the advice I get... One thing I have learned is to take in it all... Since CF seems to have so many different issues... Glad to meet another mom....:) I love the name olivia, it is such a beautiful name..