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.

Some Encouraging News

Some very encouraging news for prednisone users and CF patients courtesy of CTV:

Asthmatics with a severe form of the condition can reduce their use of steroids after injections of an experimental antibody, Ontario researchers have found.

Scientists at McMaster University and Hamilton's St. Joseph's Healthcare studied 20 patients who have asthma along with eosinophilia, an added condition that causes persistent inflammation of the airways due to high levels of white blood cells called eosinophils.

They gave them injections of an antibody called mepolizumab and then monitored their symptoms as they lowered their dosage of the steroid prednisone. After six months, the patients on mepolizumab had fewer asthma attacks compared to those given a placebo. That group saw their symptoms worsen as their prednisone dosage was reduced. The study is published in the New England Journal of Medicine.

The study's senior author, Dr. Paul O'Byrne, says mepolizumab works by blocking the production of eosinophils. "By preventing their production, we were able to improve asthma, reduce the need for prednisone and really show that eosinophils are important in causing asthma symptoms in these patients."

The 60,000 to 120,000 Canadians with eosinophilia typically take prednisone to manage their condition. But the steroid causes serious side effects such as bone loss and an increased risk of diabetes.

"Those who use more than 10 mg of prednisone a day for long periods of time put on weight, their blood pressure goes up, they could become diabetic, they have large mood swings, cataracts, glaucoma - the list is endless," lead author Dr. Parameswaran Nair told Canada AM.
Patients receiving mepolizumab "markedly reduced" their use of prednisone without their asthma getting any worse, O'Byrne said. Mepolizumab reduced the number of eosinophils to the normal range and kept them at that level for the entire study, O'Byrne said.
What's more, they noticed no side effects of mepolizumab, Nair reports. A second study of 61 patients published in the same issue of the NEJM by British researchers also showed mepolizumab therapy effectively treats patients with very severe eosinophilic asthma.

Professor Ian Pavord at the Institute for Lung Health said the results of his study suggested mepolizumab could cut severe asthma attacks by up to 50 per cent, as well as enabling patients to reduce their use of steroids. Mepolizumab is still considered an experimental drug and is currently not approved for use in Canada.

When Life Gives You Lemons

There are days when I truly am thankful for being affected by Cystic Fibrosis.

Case in point:

School has been rather hectic as of late. As April approaches, students throughout the GTA are shinning their shoes, editing the resumes and carefully crafting their portfolios in an effort to secure the ever elusive “internship.” Those of you who have experienced this sacred ritual at one point or another know all too well the stress and anxiety associated with the process.

To add to the distress, we – the students of the world – are presently applying for work in a recession. The current economic downturn has taken a severe toll on many business sectors. The reality is that most companies can’t afford to keep the employees they have, yet alone hire new ones.

So, as the rest of the aspiring work force grumbles and gripes, I take a quick moment to reflect. Sure, work is hard to come by these days; but people, you need to relax!

Tomorrow, the sun will rise, your alarm clock will sound, and life will go on.

It’s days like these when I truly am thankful for being affected by CF. Not only does the disease give me a unique perspective on the world; but it forces me to constantly analyze and re-analyze my position within it. The end result of this forced reflection is most often positive. Sure, things may be a tad bit frustrating at the moment. That’s life.

As far as I am concerned, if I am breathing and smiling – things are good. I feel privileged to be able to see the world in this light. So many people live life aimlessly; their minds immediately drawn to the ostensible negatives that surround them.

So the next time life gives you lemons:

1) make lemonade
2) add vodka
3) have a drink and chill out!

Blogging for a Purpose

Lock, load, aim, shoot…..blank.

Maybe I can’t perform under pressure, or maybe I just don’t have a strong enough passion for social media. Either way, I’m just not down with talking about the social media landscape today.

So let me start by apologizing to those of you who expect a well crafted “PR” related blog posting. Quite frankly, I’m not in the mood.

What makes my blog unique? I blog, I write, I rant, I rave; however, there is one thing that separates me from the pack.

Malcom Gladwell’s book, Outliers: The Story of Success, suggests that an individual must have 10,000 hours in a specific area to be considered an expert. Next March I will be celebrating my 24 birthday. Do the math; since my diagnosis I’ve been living with CF for over 166,440 hours. More accurately, I have been living with Cystic Fibrosis for over 210,240 hours; albeit, my diagnosis did not occur until I was 5-years-old.

What qualifies me to write about Cystic Fibrosis? It’s quite simple – I know the disease. More accurately, I live the disease day in and day out.

If 10,000 hours makes you an expert, then 200,000 + hours must make me an absolute connoisseur!

I urge you to take note of my musings; because, quite frankly, I write for a reason.

Reality Check

The Canadian Cystic Fibrosis Foundation recently released its latest advertising campaign – Drowning on the Inside. In many ways, the campaign is a form of shock advertising; the ads are controversial, disturbing and explicit. However, they are also a very accurate portrayal of what life with Cystic Fibrosis can sometimes feel like.

One video features a young child submerged in a pool of water, while another shows a child struggling to suck air through a straw.

What makes these ads so shocking?

Well, first of all, they are deliberately startling; they demonstrate the day-to-day realities of CF in a way that connects to almost anyone. Second, they all feature young children; a move that not only draws attention to the ads, but also accurately portrays the demographic most affected by the disease.

Some critics have argued that the new ad campaign is a blatant attempt by the CCFF to generate support for its cause through the inappropriate use of high impact scare tactics.

Ironically, these highly controversial ads are a breath of fresh air (no pun intended) for CF patients; most of whom often have a hard time describing how the disease truly affects them.

I would argue that the “Drowning on the Inside” campaign is no more explicit than any ad campaign released by M.A.D.D or Smoke Free Ontario. So for those of you who are offended by these ads, I ask you to reconsider the root of your disdain.

What makes these ads so shocking?

It’s not the images, the use of young actors, or the explicit analogies. These ads are shocking for one reason: they represent a truth that has never before been so accurately portrayed.


Note: To check out the rest of the “Drowning on the Inside” campaign, visit:

The Canadian Cystic Fibrosis Foudation