Sixty Five Roses

There has been a dramatic increase in both quantity and *quality* of information relative to Cystic Fibrosis issues and medical information which is now available on the net. Previously, many web sources were anecdotal and/or unattributed, or were highly summarized (abstracts only). Recently there has been a reported dramatic increase of the quality and detail of information added. There are also a few web pages by-and/or-for individuals with CF.

Many thanks to Margaret Myers for her research and information.

The Breathing Room: The beta version is now up and running on Michelle Compton's (author of dragonflypond.com) new site, dedicated to adults with CF, and issues related to Transplants.

CFRI: Cystic Fibrosis Research Inc., Palo Alto, California. Site is presently being revised and updated to include scheduled activities and programs, and information from the CF Conference.

Boomer Esiason Foundation: This site offers very supportive information and "feel". The site includes "CF News and Updates". Especially noteworthy is #13 which is a rare, longer article summarizing a Duke University study about whether certain infections should really contraindicate lung transplant (no, they shouldn't prevent transplant). Lots of excellent links listed with reviews. Margaret says: "This seems to be a site put together by people who really care about the information they are providing." [She also says the downside is the _flashy_ java animation in the header.]

CF Foundation: Excellent descriptions of videos available from CFF. NEW, just added detailed summaries of the treatment and research presentations from it's conference at Nashville in October, 1997. Reportedly the first time that CFF has shared this information! Direct link to the new info is here.

Cystic-L: A www site for Cystic-L information and sign-up. Cystic-L is the well known and widely acclaimed eMail bulletin-board for CF'ers & families. Many thanks to Ron Trueworthy. This site has links to the CYSTIC-L archives, CYSTIC-L FAQ, CYSTIC-L Research News, etc. as well as a variety of subscription management options, and other services.

Though this is said to be only a beta version of the site at an address that will change in time, Ron is making it available now because of the volume of mail he has received asking for it. Known problem: Because CF-Web is currently down any links on the CYSTIC-L page to CF-Web will not be working.

CF Web: This is the site that the Esiason folks thought was the absolute best, and now the Esiason Foundation helps sponsor. Review indicates that it has a long file of extracts from newspaper articles mentioning CF research and a sizable FAQ from Cystic L archives. Good information but anecdotal and unattributed for the most part. Includes links to other sites, English and foreign language. Unfortunately, the site address provided could not be contacted by our server. [http://www.cf-web.mit.edu/]

USACFA: [Note: This is the US outgrowth of the IACFA group which publishes the newsletter.] Appears to be under very active construction, and includes the CF Roundtable newsletter. Indicates "Chat "coming soon".

CF Index of Online Resources: This is the Lucas list--long and varied--and is aptly called "the mother of all lists." CAUTION: There are not definitions or descriptions of sites, and the sites vary wildly in quality and usefulness. You just have to go into every one to find out which is which. On a positive note, there appears to be a serious commitment here to keeping up a comprehensive list of CF links worldwide.

CF Web Ring: Seeks to link all CF sites together. Margaret reports difficulty in getting the site list to work very well. Only a few sites accessible. Many are personal sites created by people with CF or people who have lost a loved one to CF.

CF Association of Western Australia: Beautifully under-designed; exceptionally easy to read (larger typeface). See especially the "Photo Gallery".

IACFA: International Association of Cystic Fibrosis (Adults). This site has their conference schedule and newsletter, as well as an excellent list of international links.

Canadian CFF: Previously held little information, but Margaret reports a lot is happening on this site. Lists grants and research. Site dedicated to Frank Smyth, a 34 year old CF adult who addressed the Trustees of the CCFF in 1994. The text of that address is included in the site and Margaret reports it to be extraordinary.

European Society for CF: This is the association of medical professionals and researchers which holds important conferences in Europe, but they put almost nothing on the site. From 1995 they showed abstracts only. From 1997 they listed titles only. No reference as to where to find full text. Very frustrating.

The European Society for CF completed it's conference last year in Berlin, and for the first time, they have put the full text of a presentation on the site. It was a full transcription of the Joseph Levy Memorial Lecture by Niels Hoiby, Dr. Med. Sci., on Pseudomonas in CF. Includes tables and slides/images -- exactly the same concept proposed by Michelle Compton and John Myers for the 6/13/98 meeting at CFRI.

University of Minnesota CF Center: Reportedly very aggressive with education, support, and a medical team approach to care. This site was reported to have some wonderful elements. The big mystery is that it had not been updated for two years. As of May 1999, our server was unable to contact the site.

Cystic Fibrosis Society of Ireland: The CF Society of Ireland has converted its site to use for a computer course for students with CF.

Sarah Walters' Cystic Fibrosis Page: Sarah Walters is a physician with CF who lives and works in England. Margaret reports this website to be exceptional and rich in both personal and informational content.

Dragonflypond: Michelle Compton has a very rich website with art and poetry. Also contains direct links to her "Looking Glass" project photos and poetry.

Kimberly Myers: Memorial page for NASCAR driver Kimberly Myers.

Lori Brown and Ron Brown: Have been fund raising for CFRI this past few years, and have rebuilt the Kimberly Myers "65Roses" Late Model race car for both racing and promotional activities. Ron has won two track championships in the SuperStock division.

Tyler Jett Racing: Enduro Racing the #50 Mustang, with donations to CFF. They're scheduled to run at the Mountian Speedway in St Johns, PA.

© 1998-2002 SWCompton