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Friday, July 25, 2008

Cystic Fibrosis Quality of Life Program

We will be back at the CFRI Conference in San Francisco this year.  This time, we’ll be videoing with help of Genentech and The Heroes of Hope.  We look forward to meeting you, so if you plan on attending, please stop by and say hello!

Heroes of Hope link:
http://www.heroesofhope.com/heroesofhope/

Become a member! Membership has its benefitsWe’re here for you 24/7.  If you seek community, emotional support, advice, want to encourage others or simply want inspiration…you belong.



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What is Cystic Fibrosis?
An inherited life-threatening disease involving a genetic mutation that disrupts the cystic fibrosis transmembrane regulator (CFTR) protein, resulting in poorly hydrated, thickened mucous secretions in the lungs.
What is CysticFibrosis.com?
A leading online resource and support for those affected by cystic fibrosis. We’re 7500 members strong, 104 countries represented, e-Patients, experts, industry leaders, over 200,000 searchable messages and 20,000 CF related topics, over 700 bloggers, 100 CF videos and so much more to support, educate and strengthen hope.

News Feed


Inhaled sugar helps clear lungs in cystic fibrosis (Reuters via Yahoo! News)
Inhalation of a sugar called mannitol improves lung function in patients with cystic fibrosis, a serious genetic disorder characterized by abnormally thick mucus secretions in the lungs and other organs, according to a report by Australian researchers in the journal Chest.
Musical genius Chopin may have had cystic fibrosis (The Herald)
Poland has rejected a request by scientists hoping to run DNA tests on Frederic Chopin's heart to explore a mystery about his death.
Howard Stern - Sterns Sidekick Cause Of Death Was Cystic Fibrosis (ContactMusic)
LATEST: Shock jock HOWARD STERN's former radio sidekick KENNETH KEITH KALLENBACH's death was caused by complications from cystic fibrosis, according to a new medical ...
Autopsy shows cystic fibrosis killed jailed comedian (The Philadelphia Inquirer)
The comedian Kenneth Keith Kallenbach died of complications from cystic fibrosis, according to an autopsy report released yesterday by the Delaware County medical examiner.
Stampeding Toward a Cure (WCAX-TV Vermont)
The Three-Day Stampede Toward a Cure for Cystic Fibrosis in Bristol is a yard-saler's dream.
Poland says no to DNA testing of Chopin's heart (The Arizona Republic)
Scientists want to remove the heart for DNA tests to see if Chopin actually died from cystic fibrosis and not tuberculosis as his death certificate stated.
Poland says no to DNA testing of Chopin's heart (The Charlotte Observer)
Like a religious relic, the heart of composer Frederic Chopin rests in a Warsaw church, untouched since it was preserved in alcohol after his death in 1849 at age 39. And that's how the Polish government wants to keep it. Scientists want to remove the heart for DNA tests to see if Chopin actually died from cystic fibrosis and not tuberculosis as his death certificate stated. But the government ...
Bald Blair School News (Guyra Argus)
On the last day of term 2 our school had fun supporting Cystic Fibrosis by having a Crazy Hair/Out of Uniform Day. The children all looked great and thank you to all the help from parents with hair and costumes. The school raised $80-00 from this event to help Cystic Fibrosis.
Community Dance Project Participates In Benefit Performance (Garden City News)
Even though Dance Project teacher Annie Ippolito is busy planning the final details of her wedding in the fall, she and her fianc� decided to give their time and effort to fund a dance benefit for the Cystic Fibrosis Foundation this summer. Annie's cousin suffers from the disease.
After tragedy, Lake in the Hills couple helps sick kids (Daily Herald)
Doctors told Bob and Stephanie Vitner their youngest son, Andrew, born three months premature and diagnosed with cystic fibrosis, wouldn't last a month.
The Forum Categories display our most popular CF health and discussion topics. Opportunities to join in discussions are created for the CF Patient and Caregiver and now we introduce our Relevant Sponsors.  For further topic category information, Click here >
Post Title Member Posted
Anyone no were bree has dissapeared to? nicolaj 8:20
What did your infants stools look like? Chilemom 8:09
port accessed fourkidsmom 8:02
To: Just1more grsswspr 7:29
Welcome Ambry Genetics StevenKeiles 7:10

Blog Title Blogger Posted
Movin' on Up! lightNlife 7:35
dr dr dr emilee711 7:21
BAAHAAAhhhaaaaaaahahaaaaaaaa CaliSally 4:29
My heart is broken mamerth 2:05
Update!!!! cdunbar 10:46

Recipe name Category Member
Ryster Lasagna Italian Allie
Lazy Chicken Casserole American lightNlife
Chocolate Surprise Biscuit Ring American Joan

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