Blog on Chicago CF!

Annually the United States spends $3.5 billion on advertising medicines (prescribed and over-the-counter); the rest of the world spent only $1.5 billion. What’s wrong with this picture? (Source: State of the World 2001).

For Halloween, the Canadian Cystic Fibrosis Foundation and CARSTAR Collision Repair centers are sponsoring the purchase of Frightlight glow sticks for trick-or-treaters. What would be appropriate for Chicago? Deep-dish pumpkin pie? Frango Pan de Muerto?

Carrier and prenatal screening for CF is available at the Chicago Center for Jewish Genetic Disorders. According to their informational page, the incidence of Cf among Ashkenazi Jews (Jews with Central and Northern European ancestry) is the same as in other caucasian groups. Chicago boasts the third largest Jewish population in the USA, after Los Angeles and NYC.

Jerry interviewed four Directors of USACFA (United States Adult Cystic Fibrosis Association) during the August 2006 Cystic Fibrosis Research Institute annual conference in Redwood City, CA. Listen to it on your PC or MP3 player:CF Roundtable Gives Back to the Cystic Fibrosis Community (episode #0040). They talk about CF Roundtable, a dynamic newsletter founded in 1989 by and for adults living with CF; it is available for an annual subscription of $10, but is free to anyone unable to afford it. Cynthia Dunafon (on the left in the photo), one of the Directors interviewed, lives in the Chicago area and actively participates in the Chicago CF Awareness Day event.

The U.S. National Institutes of Health contains links to, presumably, all federally and privately supported CF clinical trials that are currently recruiting volunteers. The individual pages describe the study, list the sponsoring institution, trial protocols, prospective enrollment, dates, and inclusion/exclusion criteria. The site is part of ClinicalTrials.gov, a searchable database. To limit your search geographically, type in the search field “cystic fibrosis, Chicago”.

In the guise of a significant other to a USACFA Director, I accompanied Cynthia Dunafon to this year’s CFRI educational conference in Redwood City, CA, south of San Francisco, hosted at the Sofitel San Francisco Bay.  Attendance was estimated at around 200; most attendees were West Coasters, though some came from the Midwest and East Coast, and one couple traveled all the way from the Netherlands expressly to participate in the event.  Plenary sessions were held Friday night & the mornings and afternoons Saturday and Sunday, with breakout suppport group sessions Saturday afternoon and informal “CF Roundtable discussions,” led by USACFA Directors and spouses, Sunday noon.  The usual list of suspects sponsored the event, with some curious new faces: Genentech, Novartis, Axcan Pharma, Swank Audio Visuals, Solvay Pharmaceuticals, Cystic Fibrosis Pharmacy (Florida–Grandma Bev), Digestive Care, Inc., Dymedso, Inc., ElectroMed, Inc., Ambry Genetics, Hill-Rom Company, Nelson Biotechnologoes, and Two Minds at Work, LLC.  Stingent cross-infection rules prevailed.  Unlike the annual Chicago Great Strides and Chicago CF Awareness Day events, CFers had green dots on their badges, a practical–and ideological–measure with a host of positive benefits.  The hotel wait-staff was instructed to serve the CFers so that they were never obliged to touch serving implements or common vessels, thus limiting cross-infection.  As a conference devoted to exploring constructive ways of living with chronic illness, identifying the CFers enriched the experience of all of the conference goers by contextualizing the ‘identity politics” of the gathering, while giving the CFers themselves precious opportunities for mentoring and solidarity.  Cynthia & I will describe some of the research updates and conference happenings in the following weeks.

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.