Links to Pages Relevent to CF

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Most of the links on the Cystic-L web site are incorporated throughout the Cystic-L Handbook; the following links may not have yet been incorporated therein.

Cystic Fibrosis Norma Kennedy Plourde’s amazingly comprehensive compendium of links to all things CF. This is a must-see !
Cystic Fibrosis Research Incorporated (CFRI) In order to alleviate the emotional and physical suffering associated with cystic fibrosis, CFRI’s mission is to fund cystic fibrosis research and to offer educational and support programs for people with CF and their families. What sets us apart from other cystic fibrosis organizations is our commitment to offering educational and personal support to families living with cystic fibrosis. We make ourselves available to parents of CF children and CF adults because research has proven that knowledgeable and informed patients maintain healthier lives.
The CF Pharmacy The CF Pharmacy is dedicated to research and development of a new cost-effective pharmaceutical approach to the care and treatment of Cystic Fibrosis. The CF Pharmacy is an independent pharmacy for patients and families (across the United States) formed specifically to meet the needs of CF patients. In addition to medications, The CF Pharmacy carries a full-line of respiratory equipment and supplies as well as nutritional supplements. Cystic-L’s own Grandmom Bev founded this pharmacy!
Second Wind Lung Transplant Association Everything you ever wanted to know about lung transplants is found in the Second Wind Lung Transplant Handbook!
cysticfibrosis.com A Medrise.com advertising/sponsorship supported site (Medrise.com is a subsidiary of M.L. Burke Consulting, Inc.) for the use of people with cystic fibrosis. Forums for Adults, Families, Young People and Teens.
Cystic Fibrosis Resource Centre This UK web site has been produced by Solvay Healthcare Ltd., and is designed to offer advice and guidance to cystic fibrosis patients, parents, doctors and other carers. Resources and information are provided which will hopefully help you in resolving problems and coping better with cystic fibrosis on a daily basis.
A Message From Above A personal page dedicated to the memory of Holly Kay Mattke-Wheelock and Heather Kay Mattke, and to families who have lost a loved one to CF, and to the families who have lost a loved one who was waiting for an organ transplant.
Utah Valley Institute of Cystic Fibrosis The Utah Valley Institute of Cystic Fibrosis was organized in January 1999. The site contains much information about the inhalation of GSH (glutathione).
Cystic Fibrosis An unusually well-designed personal page containing CF information, featuring a “Coping” page particularly useful to those who live in New Jersey.
Federación Española contra la Fibrosis Quística A non-profit organization providing information about CF in Spanish, French and Portugaise. Information about the Federación Española contra la Fibrosis Quística. Information about grants.
Sandy’s Cystic Fibrosis Page Information about CF and links to other CF pages.
My Life With Cystic Fibrosis A cute personal page about Lily, providing one little girl’s thoughts on Cystic Fibrosis, “in her own words.”
How to Handle Living With Cystic Fibrosis A personal web site designed for teenagers and young adults who have cystic fibrosis, though anyone is welcomed to read it! This web-site contains helpful hints for living with CF. All stories and suggestions are based on the author’s (a pwcf) own experience and/or opinion.
Canadian Cystic Fibrosis Foundation Official web site of the CCFF. Find copies of excellent CCFF publications about CF, research updates, lists of CF treatment clinics/centers, and more.
Living with Cystic Fibrosis A personal site with CF research, links, and memorials to some that we have lost to this disease. Also a picture showing what a Mic-Key G-TUBE looks like for feeding tubes.
A Living Miracle Personal web site designed by Donald Shores in honor of his mother Katherine Shores of Aulander, North Carolina. She is the oldest living cystic fibrosis patient in the United States.
Camp Funshine Camp Funshine is a summer camp for people with Cystic Fibrosis.
Jake’s Page A personal web page about CF.
Cystic Fibrosis Victoria Information on Cystic Fibrosis Victoria, the organization and how it helps Victorians with CF. Also information on CF, the 65 Roses Newsletter and Online Shop (goods shipped within Australia only).
Mukowiscydoza Najwiekszy SERWIS poswiecony mukowiscydozie. Informacje o sposobie rozpoznawania choroby, rehabilitacji, najnowszych osiagnieciach naukowych, postepach w leczeniu. Na stronie tak¿e dane o stowarzyszeniach, sympozjach i literaturze fachowej.
Genevieve’s Cystic Fibrosis Site Genevieve lives in Australia, talks about her personal experiences with CF, and offers alternatives to treatment other than antibiotics.
CFparents Mailing list focusing on the problems and needs of parents raising kids with CF. This is a SECULAR list.
The Compassionate Friends The Compassionate Friends is a national nonprofit, self-help support organization that offers friendship and understanding to bereaved parents, grandparents and siblings. There are no religious affiliation and no membership dues or fees.
Blackbird Productions Blackbird Productions provides affordable interactive dinner theatre murder mysteries and donates a portion of the profits from each show to CF.
Iditarod 2003 – Mush On For Cystic Fibrosis This is a developing site by a husband and wife team who’s going to race the 2002 Ididarod sled dog race in Alaska to raise money for CF. They don’t have any kids with cf, if fact they didn’t even know anyone with cf when they started this endeavor. They just read about cf and said, “Hey we need to help in this cause”. Take a look and see how you can support their efforts.
The Dreamsurfer Network The principal component of the Dreamsurfer Network is the Dreamsurfer Central Web site which is open to people ages 8-18 suffering from a life-threatening illness. At the Web site, people can participate in activities such as moderated chats, multi-player games, discussion topics, message boards, and locating information in the site library. Currently, the majority of the people participating in the Web site have Cystic Fibrosis. To join, click the link that says “The Dreamsurfer Network” in red on this page, then click “Contact Us” and fill out the form. You’ll be mailed an application.
Information on Selected Aspects of Cystic Fibrosis This page contains information on diabetes, hemoptysis, nasal polyps, reducing lung congestion, tea tree oil, and magnesium.
KidsTouchedByCF KidsTouchedByCF is a moderated/restricted list for children with Cystic Fibrosis or for siblings of children with Cystic Fibrosis. The list is not open to adults, except for adult moderators.
MyCysticFibrosis MyCysticFibrosis.com is provided by Protocol Driven Healthcare, Inc. with a grant from Solvay Pharmaceuticals, Inc. On the site users will find a personal interactive diary for recording health information, including lung function and dietary information. Members, parents and or caregivers can easily review progress and symptoms with specially designed charts and graphs.
America’s Challenge Foundation The Cystic Fibrosis program was adopted and is sponsored by America’s Challenge Foundation and was established in September of 1999. To assure and provide financial support to children and their that do not have the financial resources to properly maintain adequate care that is required to; pay doctor, hospital, travel, lodging, and pharmaceutical expenses to improve the quality of life for those with CF disease. While other Cystic Fibrosis Foundations are focusing on funds for research and the prevention of Cystic Fibrosis, America’s Challenge is assisting the patient and the parent’s in their day to day existence.

NOTE: THE LEGITIMACY OF THIS ORGANIZATION HAS NOT BEEN CONFIRMED BY MEMBERS OF CYSTIC-L.

SHOP4CF A service established by Mel Kotlyar, a young man with CF, to raise money for the CFF at no extra cost to buyers! Shop at 1400 major stores such as Nordstrom’s, Dell, the Good Guys and many others. When you shop online they will donate a portion of the spending back to the CF Foundation for research and other programs to benefit the cause. Why not purchase what you already buy but do it online and have it quickly and safely delivered to your home or office and help support CF kids and adults all in one? Imagine buying groceries and having it help find a cure for CF!
Sevier County Chapter of Cystic Fibrosis The Sevier County Chapter of the Cystic Fibrosis Foundation was formed in 2000. The effort was led by Jim Deanda and Barbara Gray who have two children with Cystic Fibrosis, Callie, age 5 and Cale, age 3. In 2001, with the help of over 25 volunteers, the chapter raised $25,000. This was used for research to find a cure.
Lucy’s Page This page started out as a CF fundraiser and has grown to provide information as well as Lucy’s story about her late diagnosis.
Cochrane Cystic Fibrosis & Genetic Disorders Review Group We are a non-profit making organisation made up of an international network of health care professionals, researchers and consumers. We prepare, maintain and distribute systematic reviews of randomised control trials of treatment and interventions for cystic fibrosis. If you would like to know how you can benefit from and contribute to our work, take a look at our web site – see you there soon!!
Dedicated to a Princess A site dedicated to my wife, soul mate, and best friend Kate McCloughan who ended her battle with CF on 01/25/02.
My Sunshine “Gone To The House On The Highest Hill” – A true life story about a 12 year old boy named Chuck, and his battle with Cystic Fibrosis.
Cystic Fibrosis Worldwide Cystic Fibrosis Worldwide works to promote access to appropriate care and education to those people living with the disease in developing countries and to improve the knowledge of CF among medical professionals and governments worldwide.
CF Solutions, Inc. CF Solutions is a 501(c)(3) not-for-profit cystic fibrosis pharmacy providing medications, home IV therapy, nutritional supplements, medical & supplies as well as pulmonary rehab to Oklahoma CF patients regardless of their ability to pay. They also have a CF Pulmonary Rehab Center.
Transplant Support- Lung, Heart/Lung, Heart We are not alone in our endeavor. If you are pre transplant, or post transplant, or a family member or a friend, you will find this web site informational, helpful and a place to connect to others. Share your thoughts, feelings, experiences, future plans and how your transplant has changed your life. Check the news out and see what the future looks like for us as far as therapies, medicine. Great links to other transplant sites, lung illness sites and heart illness sites. Want to read a book? Listed are books of interest and a great way to learn more. Organ Donation is one of my personal objectives, to get the word out and to promote it.
Alex Detore’s Web Site Alex is an 8 year old boy who was diagnosed with CF at 7 years old. He has also been battling medulloblastoma, a malignant type of brain tumor since the age of 4. This is his story.
STARBRIGHT Family Room The STARBRIGHT Family Room is an online community that provides information and support to help families care for their seriously ill child. The site features practical tips, daily solutions, and inspiring personal stories from other parents who have “been there.”
Alice Martineau Remembrance Site Alice Martineau was a singer/songwriter who had cystic fibrosis. Despite needing a heart lung and liver transplant, and being unable to travel further than two hours from London, Alice was able to overcome the difficulties of getting signed up and went on to release an album under Sony. Alice has also appeared in a BBC documentary, “The Nine Lives of Alice Martineau.”
New Jersey State Organization of Cystic Fibrosis NJSOCF is a not-for-profit organization that uses its donated dollars to purchase the daily necessities of living for patients with the disease. These include prescription drugs, medical equipment, nutritional supplements and extra nutritious foods. Services are available to patients from birth to adulthood. Adult patients receive services through a special state-funded program specifically for adults with cystic fibrosis.
United States Adult Cystic Fibrosis Association United States Adult Cystic Fibrosis Association (USACFA) is the publisher of CF Roundtable – the newsletter for adults who have CF.
Cystic Fibrosis A commercial site with information about cystic fibrosis.
PWCF Net A site in the United Kingdom “for people with cystic fibrosis, made by people with cystic fibrosis.”
The Reach for the Stars Foundation The Reach for the Stars Foundation is devoted to alleviating the myriad of devastating consequences suffered by the CF afflicted and their families. Our objective is to enhance their quality-of-life, now, so that they will be healthy enough to be the beneficiaries of on going research and medication advancements. Ultimately, our ambition is to see them live long enough, so that they will be able to see a cure for this devastating disease.
Beautiful Beginnings Youth Inc. The home of Beautiful Beginnings Youth Inc. and the Tales of Madison Faith series of children’s books. “With vision and hope, we forge ahead to create awareness and raise research dollars for a cause that is very near and dear to our hearts, cystic fibrosis.”
The Dream Foundation The mission of the Dream Foundation is to enhance the quality of life for individuals and families battling terminal illnesses. The Dream Foundation is the first national wish-granting organization for adults over the age of 18.
Child of Life.com This website is the celebration of the life of Joseph Arthur Lopez, an energetic 3 year old living with Cystic Fibrosis. Includes a 10 minute video describing a couple’s experiance with their child with cystic fibrosis and the creation of a song about him.
Fertility, Pregnancy, Childbirth, Breastfeeding and Health for Adults with CF This website is dedicated to the dispensing of accurate, current information regarding fertility, pregnancy, childbirth and breastfeeding for women and men with Cystic Fibrosis.
Faith & Awareness This site is about Jeff Jergensen’s family, his boys with CF, their faith, and to raise awareness about CF
Fertility, Pregnancy, Childbirth, Breastfeeding and Health for Adults with CF This website is dedicated to the dispensing of accurate, current information regarding fertility, pregnancy, childbirth and breastfeeding for women and men with Cystic Fibrosis.
Run for Cystic Fibrosis NYC Marathon Runner Christopher Costa is running the 26.2 miles to raise money for Cystic Fibrosis. Information, including how to donate, is provided.