A New Spin on Fundraising

Last week Emily Schaller, a 27-year-old with Cystic Fibrosis, began a 2,000-mile journey aboard a Vespa scooter - riding from Chicago to Burbank, California, in her quest to raise funds and awareness for CF.

Schaller, who plans on capping off her journey by appearing on The Ellen DeGeneres Show, has appeared in Forbes magazine, The New York Times and was voted the 2009 Applebee's "National Real Hero".

Her fundraising expedition will pass through 14 cities and seven states, including Illinois, Iowa, Nebraska, Colorado, Utah, Nevada, and California.

Emily's trip will be captured on video and highlights posted on her Web site. Her ride will benefit the Cystic Fibrosis Foundation, the leading organization devoted to curing CF.

Click here to make your own personal donation to the Canadian Cystic Fibrosis Foundation.

The Common Cold – A Potential Cure For Cystic Fibrosis?

Article from Science Daily:

Scientists have worked for nearly two decades to perfect gene therapy for the treatment of Cystic Fibrosis. This summer, scientists from the University of North Carolina found what may be the most efficient way to deliver a corrected gene to lung cells collected from Cystic Fibrosis patients.

Using one of the viruses that causes common colds, the UNC scientists found that delivery of a corrected version of the CF gene to 25 percent of cells grown in a tissue culture model that resembles the lining of the human airways was sufficient to restore normal function back to the tissue.

"This is the first demonstration in which we've been able to execute delivery in an efficient manner," said Ray Pickles, Ph.D., associate professor of microbiology and immunology at the UNC Cystic Fibrosis Research and Treatment Center. "When you consider that in past gene therapy studies, the targeting efficiency has been somewhere around 0.1 percent of cells, you can see this is a giant leap forward."
"We discovered that if you take a virus that has evolved to infect the human airways, and you engineer a normal CFTR gene into it, you can use this virus to correct all of the hallmark CF features in the model system that we used," Pickles said. For instance, the experiment improved the cells' ability to hydrate and transport mucus secretions.

Now the researchers must work to ensure the safety of the delivery system. In a pleasant surprise, simply adding the CFTR gene to the virus significantly attenuated it, potentially reducing its ability to cause inflammation. But the scientists may need to alter the virus further.

"We haven't generated a vector that we can go out and give to patients now," Pickles said, "but these studies continue to convince us that a gene replacement therapy for CF patients will some day be available in the future."

Always Looking Up

After a solid month of frustration, things appear to be changing for the better.

In what has become a yearly ritual, I was once again rocked by a pretty severe lung infection this summer. I am assuming these reoccurring bouts are a result of seasonal changes, allergies, and the endless 16 hours days required to organize Friends For Life every July. Nevertheless, the inevitable “summertime drop” in lung function and FEVI have become an ongoing reality.

To further complicate the matter, the prednisone, which has done a fantastic job of controlling and minimizing my symptoms over the last two years, has become an increasing concern. The side effects of extended prednisone use vary in kind but not in severity. From osteoporosis, to diabetes, to liver and kidney failure, the drug leaves its mark on patients in many differing ways.

This week, after a particularly harsh month filled with lung, liver and kidney complications, I paid a visit to the medical team at St. Michael’s Hospital.

My doctors discovered that my lung function and FEV1 had in fact dropped significantly – almost 20 per cent. To further complicate things, blood tests confirmed that my kidney and liver levels were severely out of whack – a definite side effect of the high levels of prednisone.

The team decided that the best course of action was to immediately start me on a 14 day course of antibiotics. The equation is simple, stop the lung infection, reduce my reliance on the prednisone and, in turn, improve my kidney and liver function.

Well, I am happy to report that after a week of antibiotic treatment I seem to be feeling much better. The tightness and coughing have certainly eased up, and my prednisone levels have remained at the relatively low dose of 10-15mg a day.

As I mentioned earlier, things appear to be changing for the better.