April 2002 

Julie Feldman MPH RD, Clinical Dietitian

A new route of therapy is being developed called "compacted DNA" gene therapy.  This research started by a small Cleveland biotech company is designed to correct the genetic disease of CF.  On April 2nd, this new therapy will be trialed for the first time at Rainbow Babies and Children's Hospital in Ohio.  The new therapy will drip through a plastic tube into the patients nose.  The fluid being tested is designed to carry working versions of the faulty genes to the body.   Currently, the researchers are not expecting a cure, but rather just studying to see if the doses are getting where they need to go.  If you want to start investing, the company is Copernicus Therapeutics.  We'll keep our eye one it!

As many of us know to well, the problems associated with antibiotic resistance are many.  But new research in the field being done by Princeton University has uncovered a new pathway inside bacterial cells that is critical for their film formation.  This may be a new target for antibiotics, researchers say.

The Pittsburgh CF Foundation has got it right.  For the 16th year in a row, the Pittsburgh Penguins have participated in a fundraiser entitled Penguins At Your Service.  They are the hosts at a gala evening event in which they also serve as the waitstaff.  Funds are raised in the form of tips that total greater than $300,000.  500 fans make the event a sellout every year!

Orphan status usually denotes a negative connotation, but in this case orphan drug status from the FDA means that a new drug developed by Corus Pharmaceuticals from Seattle will be able to be tested on patients with CF.  The inhaled therapy to control gram-negative bacteria in the respiratory tract. 

Orphan drug status is given to drug when the prevalence of a disease occurs in less than 200,000 patients in the U.S.  Under this label, the FDA established procedures intended to encourage drug companies to research in the area.  Companies that complete the research are then given seven years marketing exclusivity when the product is finally approved.

Proteome Systems Ltd. and the CF Foundation have announced an agreement to work on a proteomic research  program aimed at discovering new protein targets for CF research.  The protein they hope to uncover may be used to monitor the progression of the disease and help scientists develop more effective interventions.  Dr. Jenny Harry of Proteome cited the constituents of mucus and submucosal gland secretions as important areas of new research.

Recently I have been receiving a lot of questions regarding the use of nutrition supplements to boost immune function, weight gain, and general health.  I am always cautious in giving you back information regarding this topic for a number of reasons.  I thought I would address them for the "whole group" so I don't come across as being opinionated or one-sided in our discussions.
The rationale behind taking nutrition supplements is a positive one of course.  Why else would the US population spend billions of dollars each year these products.  But what a lot of people don't realize is the potential harm that can be incurred from mixing supplements and prescription medications.

In a population group like this one (yes you guys) with the large numbers of prescription medications that you take on a daily basis, we worry about 2 main things.  One is that the supplement you may take would make your prescription drug less potent by causing it to broken down more quickly.  The second thing that could happen is that the supplement would make your prescription drug more potent by not allowing your body to break it down in the same way that it usually does. 

Whatever the case may be, we encourage you to keep us updated of any supplements that you are currently taking or are interested in taking so that we may be able to educate you on the specifics.