Blog on Chicago CF!

All Aboard Chicago CF! is now available for postings and follow-ups. No registration is necessary–if you have a browser and something to communicate to the greater Chicagoland community, this is the fastest way to publish in cyberspace. Either book mark it or use the Link on this blogsite.

CF was first identified in an Arab country in 1958 (Lebanon). Four years later, three other Lebanese children were diagnosed, one with an Arab pedigree going back for four generations. Since then, cases have been confirmed in the United Arab Emirates, Jordan, Kuwait, Bahrain, and Saudi Arabia. Under-diagnosis at child birth is undoubtedly common due to lack of sweat tests and clinical training for the disease. Incidence of occurrence has been estimated at 1:2560 live births (Jordan), 1:3500 (Kuwait), 1:5800 (Bahrain). Although the DeltaF508 and 3120+1G>A mutations have been identified, many other CFTR mutations have been documented, several of them unique to the region. As of the late 1990s, the median survival rate for Arab CF patients was 10.9 years, as opposed to 32 years for North Americans. According to the Cystic Fibrosis Foundation of Israel, both Jewish and Arab populations in Israel suffer the same incidence of CF live births, 1:5000. Out of a 2001 study of 9,430 healthy Jewish Israeli individuals of 36 countries of origin, the prevalence of CF mutations was 1:19, 1:19, 1:28, and 1:42 for the Ashkenazi, Sephardi, North African, and Eastern Jews, respectively.

Welcome to Blog on Chicago CF, the official blog of the Chicagoland Adult Cystic Fibrosis Association and annual Chicago Cystic Fibrosis Awareness Day! The purpose of this blog is to facilitate, and build, communication within the Greater Chicago Cystic Fibrosis community. We eagerly solicit postings of any nature that are relevant to this metropolitan community–announcements of events, births, memorials, marriages, public inquiries, requests for assistance, news items, pictures, recipes, what have you. This a moderated blog, meaning that all posts and comments will be vetted by us before they are published online. Please respect the members of this community and your hard-working blogmasters by not attempting to post commercial duns (spam), material that is libellous, sexually explicit, infringing someone’s copyright, or that falls under the umbrella of hate-mail, and do not even think about conducting a flame-war on this forum.

Melanie Ann Apel, a RT from the Chicago area, has published a book this April bursting with interviews of Chicago Cfers and family members. She is scheduled to participate in a breakout session at this year’s Awareness Day, and will be available to answer questions about her latest book.

IF you have read her book, tell us about it, or post a review.

We are looking for dedicated individuals with good communication skills and a modicum of expertise with blogs and online message boards to help moderate our website (http://chicagoawareness.org), blog (http://chicagoawareness.org/blog) or message board (under construction). This will entail using a browser to monitor discussions, post articles and images of interest to the greater Chicagoland community, delete spam on a regular schedule, and sharing the tasks with others. We also badly need an individual who will periodically check the links of these venues and add others. If interested contact us at cacfa@chicagocfawareness.org

Do you bike, swim, jog, pump iron or shoot hoops aggressively, and juggle CF? This year’s Awareness Day program needs CFers who pursue sports or physical fitness with a passion, who are willing to share their stories as part of an afternoon breakout session devoted to Cf and exercise. Please contact Maureen Garvey at mgarvey@lumc.edu or (708) 327-9134.

Comments–what kind of physical fitness presentation would you like to see at the 2006 Awareness Day? Speakers? Topics?

We need a dedicated digital photographer who will document the Awareness Day in images, photographing the plenary sessions, circulating among the breakout-sessions, and requesting portrait photos of families, friends and individuals. If interested contact us at cacfa@chicagocfawareness.org

We need someone with a cellphone and a cool head who will check that the audio/visual equipment in the breakout session rooms is in place & operational, and who is constitutionally steeled to deal with random conference-related contingencies. Please contact Maureen Garvey at mgarvey@lumc.edu or (708) 327-9134.

If you know of an individual or company that specializes in head-and-neck massages, preferably with experience in treating individuals with chronic illnesses, and that would be willing to “ply their trade” during the Awareness Day in exchange for free publicity, please contact Maureen Garvey at mgarvey@lumc.edu or (708) 327-9134.

Don’t leave with the impression that every job is accounted for!  Volunteer, and we will probably put you to work–ask Maureen.

Do you have ties to a newspaper, newsletter, radio station, television? We are hungry for local publicity that promotes the Awareness Day as a means of reaching CFs, family & friends who are not a part of the Chicagoland CF clinic network. Please contact Maureen Garvey at mgarvey@lumc.edu or (708) 327-9134.

If you are running a website or blog and would like to post a link to the Chicago Awareness Day website or blog–please do so!  And–if you are running a CF-related internet site, post it here–leave us a comment.

Instructions: In order to make a post, you must first register and login. On the lower right of the blog window, click on the hotlink labeled “Register”, fill out the form, which is simply your real name, email address, and a user-name of your creation, and press submit. A password will be generated automatically by the system and sent to your email address, usually within minutes. Click on the hotlink in the email, login with your user-name and password, and a screen will appear with your “profile.” Add to this information, if you wish, and then choose “write” from the menu and “write post”. When you are finished with the draft, press “Save” and we will review it and publish it on the blogsite, hopefully within twenty-four hours of submission.

In order to write a comment to someone else’s post, you do not have to be registered. Simply click on the “Comment” hotlink and a white text window will appear. When you are done, press “Submit” and we will review your comment and add it to the post as soon as we humanly can.

Please note: we are not a commercial enterprise.  We have no nefarious plans afoot to sell your email addresses to the highest bidder, nor can anyone save for the site administrators access this information, ever.  Registration with your name and email is a necesary ingredient in the moderation process, should we need to contact you  about a submission or, heaven forbid, block your submission privileges because of inappropriate and/or malicious content.