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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
 

Cystic Fibrosis Association Slovenia
http://www.drustvocf.com/english.php

The purpose of our association is to assist all patients affected with cystic fibrosis and their families to achieve the highest possible quality of life that contribute to a better and longer life of patients affected with cystic fibrosis in Slovenia. The society is intended to address and alleviate social distress and difficulties of people, providing assistance to people whose health or life is threatened, and the strengthening of public health. One of goals is also to inform general public about the CF and various aspects of life of patients affected with it.

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.

bioFILM PA™
www.cf-test.ca/

bioFILM PA™ is a biofilm susceptibility test which helps doctors determine which antibiotics to use in a specific infection. It determines the susceptibility of the bacteria to a panel of antibiotics.

 
 
 
   

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In The News
New drugs for cystic fibrosis bring hope
July 29, 2010 at 07:37 PM
 Emily Schaller likes to travel as part of the cystic-fibrosis advocacy she does, but the daily regimen she uses to manage her disease weighs her down.

Pair plans to bike to South Haven to benefit cystic fibrosis research
July 28, 2010 at 02:12 PM
 What began as kind of a boring summer has been turned into something positive for a pair of Lenawee County residents. Ellie Jacques and Matt Roberts are doing a fundraiser for cystic fibrosis research by taking a 150-mile bike ride from Clinton to South Haven and back starting Aug. 8.

Shoppers get steamy for cystic fibrosis
July 27, 2010 at 01:22 PM
 Between the stuffy building and the well-dress crowd, the Sale Soir�e Thursday night was one hot party. The event was the brainchild of Tara Mills in an effort to support the Cystic Fibrosis Foundation. by Laura Turner Between the stuffy building and the well-dress crowd, the Sale Soir�e Thursday night was one hot party. The event was the brainchild of Tara Mills in an effort to support the ...

CPF announces nationwide advertising campaign to increase awareness about PF
July 30, 2010 at 05:51 AM
 The Coalition for Pulmonary Fibrosis announced today a nationwide advertising campaign to spread the word about Pulmonary Fibrosis is underway in an untraditional setting on the nation's interstates. Together, a billboard ad and truck ads are part of a nationwide campaign to raise eyebrows and awareness of the deadly lung disease.

Woman texted pictures of herself dying
July 30, 2010 at 01:29 PM
 DOCTORS told�Jo Dowling meningitis rash was just a "minor infection" as�her life ebbed away.

Name change reaches to past
July 27, 2010 at 06:28 PM
 Years ago the Canadian Cystic Fibrosis Foundation chapter in Powell River held a fundraising Dream Auction every April. After many successful years the auction morphed into the Brad Bombardir Golf Classic and, at Bombardirs request, proceeds went to cystic fibrosis and Powell River Kings Hockey Club.

Press Release
July 29, 2010 at 04:33 AM
 Vertex Pharmaceuticals Incorporated (Nasdaq: VRTX) today provided an update on recent progress in its development programs in hepatitis C virus (HCV) infection, cystic fibrosis (CF) and other diseases and reported consolidated financial results for the quarter ended June 30, 2010.

Pool center's July 31 CF fundraiser features dunking booth
July 28, 2010 at 08:27 AM
 Sweetwater Pool & Spa Center will host a carnival to benefit cystic fibrosis patients at the store, 6619 Baltimore National Pike, July 31, from 8 a.m. to 5 p.m. Admission is free. Traditional carnival activities such as ring toss and bowling will be available for 25 cents each. Snow...

Group gathers to honor friend on her birthday
July 29, 2010 at 12:25 PM
 A small group of friends and coworkers gathered Wednesday at the Wenatchee Valley Medical Center parking lot to remember Jessica Markie, who died this past January of cystic fibrosis. Markie, who would have turned 31 on Wednesday, worked at the Medical Center.

Saline student advocates for cystic fibrosis patients
July 25, 2010 at 10:16 AM
 Neil Flavin knows the impact cystic fibrosis has on families, and he's getting the word out in a big way.