CysticFibrosis.com - resource for cystic fibrosis information, support and news

Cystic Fibrosis Network

Members, Share Your CF Related Web Site Here.

To Our CysticFibrosis.com Members:

We encourage all of you who have personal and custom CF-related web sites to please share them with us! Our Member Health Network is designed with you and your knowledge in mind. Help us stay informed and on top of the latest ideas, how-tos, inspirations and all that you encompass. Join today by filling out the form below. We will review your site, and respond within 24 hours.

Together, we EMPOWER!

Sarah K


	Norma Kennedy Plourde http://www3.nbnet.nb.ca/normap/CF.htm Cystic Fibrosis Information from a 47 year old woman and former nurse with CF. Compilation of information and links, updated often. This site has been up since 1997, and has been useful to many people. Orlando Trophy Bass http://www.orlandotrophybass.com Orlando Trophy Bass is a fishing guide service in Orlando, Fl. Owned and operated by Kevin Przybyl, a diagnosed at birth Cystic Fibrosis patient. The business' sole purpose is to raise awareness about CF and funds to donate towards education and research. Kevin donates $25 of every trip to the CF Foundation. Heather Summerhayes Cariou http://www.sixtyfiverosesthebook.com Site created around "Sixtyfive Roses: A Sister's Memoir," a book about one family's love, loss and survival with CF. Book excerpt, news & reviews PLUS inspirational quotes, reference pages to other great books, organizations and websites, as well as stories written by other well-sibs. Cystic Fibrosis Foundation www.myspace.com/cffcentralpa A website developed to create awareness and education of the disease, cystic fibrosis. Also, this website is being used to recruit volunteers to make our events more successful, raising more money and making CF stand for "Cure Found"!!!! Rock CF www.letsrockcf.org Led by Emily Schaller, the Rock CF Foundation is dedicated to increasing the quality of life for people with Cystic Fibrosis. With the help of a core group of volunteers, the Foundation utilizes the arts, entertainment, fashion and fitness to support research initiatives and heighten public awareness in the fight against cystic fibrosis. I Love Stanley NYC www.iLOVEstanleyNYC.com Our son Stanley is the smile of today and hope of tomorrow for CF. His site has been developed to tell the story of how a young boy grows with the challenges of CF, all while being happy, playful and thankful. His site has increased an enormous amount of awareness around his disease in NYC and the CF walk. Check it out- your link is also listed on his site... Risa’s Site www.Transplantbuddies.org TransplantBuddies.org is a daily interactive website where transplant recipients and caregivers share feelings and thoughts about their gift of life. Jody’s site www.cfnutrition4life.com Support and topics include Breast Feeding and Nutrition. Dedicated to helping families and adults with cystic fibrosis find new ways to look at food and supplements. Explore recipes and ideas for HEALTHY, SUPPORTIVE, HIGH CALORIE meals and snacks. Also dedicated to providing information, encouragement, and support to families whose children have been diagnosed with cystic fibrosis and who wish to breastfeed their babies. Julie’s site www.cysticfibrosismaleinfertility.com This website is a compilation of information on cystic fibrosis and male infertility treatments, as well as our experiences on our journey to have a biological child. This site was created with the intention to provide thorough information to those seeking further guidance on male infertility caused by the Cystic Fibrosis (CF) gene. I hope that all will find it useful, whether it be a couple, an individual or a family in their attempts to biologically father a child. -Mark and Julie Holly T. Bendz www.6500redroses.com 6500redroses.com is a project of love and hope: the love for my daughter Maggie-Faye who was born with Cystic Fibrosis, and the hope that a cure for Cystic Fibrosis will be found in her lifetime. Lauren (lightNlife) understandingcysticfibrosis.blogspot.com Diagnosed with cystic fibrosis at birth, I was not expected to celebrate my 10th birthday. I am now in my late twenties, married, and working as a professional freelance writer and environmental scientist. God has continued to uphold me as I battle with a number of health issues relating to CF. I have created this site with the following goals in mind: educate, enable, encourage. A growing compendium of cystic fibrosis information. Links to articles, descriptions of medical procedures and devices, product reviews, and personal stories. Ginny (breathin is believin) www.codydieruf.com Dedicated to the Dieruf family in honor of Our daughter Cody who died from Cystic Fibrosis at the age of 23 on April 28, 2005. The Cody Dieruf Benefit Foundation was fomed to pay tribute to Cody's legacy and to help finance medical/travel expenses and provide educational and cultural opportunities for our local families in Bozeman, MT. Amanda (Augustmom0003) www.fightforethan.com Personal site started in honor of our son, Ethan, to promote cystic fibrosis awareness and education. Bob Moriarty www.team-pj.com A site dedicated to a young boy's courage, my grandson Patrick John Moriarty jr. (PJ). Joel Brachbill (Team Joel) www.teamjoel.com Team Joel is a network of individuals who have been inspired through Joel's illness to raise awareness of Cystic Fibrosis and drive fundraising efforts with hopes of someday finding a cure for CF.

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In The News

Bayer lung infection drug gets orphan status (AP via Yahoo! Finance)
March 11, 2010 at 10:29 AM
Bayer HealthCare Pharmaceuticals said Thursday that it received orphan status for an inhaled drug intended to treat lung infections in cystic fibrosis patients.

Dedham event making strides against disease (Boston Globe)
March 11, 2010 at 12:33 AM
Although it�s still more than two months away, supporters are already on alert that it�s time to start limbering up for the annual Dedham Great Strides Walk for Cystic Fibrosis.

FDA Grants Bayer HealthCare Pharmaceuticals Orphan Drug Designation for Investigational Ciprofloxacin Dry Powder ... (PR Newswire via Yahoo! Finance)
March 11, 2010 at 09:00 AM
Bayer HealthCare Pharmaceuticals announced today that an orphan drug designation has been granted by the U.S. Food and Drug Administration for ciprofloxacin dry powder inhaler for management of pulmonary infection due to Pseudomonas aeruginosa in cystic fibrosis patients.

Fundraiser nets over $14,000 for PACFI (The Milton Standard-Journal)
March 11, 2010 at 09:33 AM
MIFFLINBURG � Mike & Dot�s II was packed wall-to-wall Saturday with community members who came out to taste chili concoctions, bid on auction items and raise funds for cystic fibrosis.

How an NFL QB funds this student's education (Seattle University Spectator)
March 10, 2010 at 10:49 PM
By: Kelton Sears Living, breathing and succeeding, Jonathon Brown fights cystic fibrosis Jonathon Brown, originally from Memphis, Tenn., was born with the genetic disease cystic fibrosis. One of the most common life-threatening genetic diseases in the United States, cystic fibrosis causes thick, sticky mucus to collect in the lungs and the pa...

Jaffer pleads to reduced charge, fined (Orangeville Citizen)
March 10, 2010 at 08:47 PM
Instead of facing trial for impaired driving and cocaine possession, a former MP and husband of a federal cabinet minister has made a $500 donation to Cystic Fibrosis and paid a $500 fine for careless driving.

WDAM.com Laurel-Hattiesburg, MS The Pinebelt's Choice For News, Sports and Weather | USM fraternity takes on cystic ... (WDAM-TV Hattiesburg)
March 06, 2010 at 05:51 PM
HATTIESBURG, MS (WDAM) - Nearly 200 people gathered on the Southern Miss campus Saturday morning to support the fight against cystic fibrosis. They took part in the 20th annual, "Great Strides Walk." The walk is a fundraiser for the state chapter of the Cystic Fibrosis Foundation.

Is Prenatal Screening For Rare Diseases Like Spinal Muscular Atrophy Too Costly? (Medical News Today)
March 09, 2010 at 08:43 AM
Spinal Muscular Atrophy (SMA) is one of many serious disorders for which prenatal testing is available. SMA affects approximately 1 in 10,000 live births and is the leading genetic cause of infant mortality and the second most common autosomal recessive disorder, after cystic fibrosis. Although the American College of Medical Genetics recommends carrier testing for all couples, the American ...

Victim bound 'so tight, he died' (News 24 South Africa)
March 09, 2010 at 01:38 PM
The duct tape used to tie up cystic fibrosis sufferer, Mark Truter, was so tightly wound around his face that it would have smothered a healthy person, the KwaZulu-Natal High Court has heard.

New article sheds light on the costs and benefits of screening for SMA (News-Medical-Net)
March 09, 2010 at 07:27 AM
Spinal Muscular Atrophy is one of many serious disorders for which prenatal testing is available. SMA affects approximately 1 in 10,000 live births and is the leading genetic cause of infant mortality and the second most common autosomal recessive disorder, after cystic fibrosis. Although the American College of Medical Genetics recommends carrier testing for all couples, the American College of ...