Obama mentions Cystic Fibrosis in Speech

by Eileen on April 23, 2008

I know that this website is definitely not the place for politics, and I’m definitely not trying to go that route. That said, I thought it was pretty cool that Senator Obama mentioned CF in his speech last night after the results of the Pennsylvania primary came out. Here’s the specific quote:

“We’re here because of the young man I met in Youngsville, North Carolina who almost lost his home because he has three children with cystic fibrosis and couldn’t pay their medical bills; who still doesn’t have health insurance for himself or his wife and lives in fear that a single illness could cost them everything.”

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Happy Earth Day!

by Eileen on April 22, 2008

In honor of earth day, I just wanted to mention how focusing on the health of our planet can improve our own heath, as well. Air pollution can be especially detrimental to lung health, particularly for patients with cystic fibrosis. Hopefully the increasing emphasis on environmental concerns such as reducing carbon emissions will lead to better air quality for everyone. We should all be aware of our actions with regard to the environment - even the tiniest things, if done by enough people, can make a difference.

Some things you can do to make your own little dent: [click to continue...]

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Nature Medicine recently published a study that looked at some of the effects from defective CFTR proteins in mice. The researchers were attempting to find more specific reasons why defective CFTR proteins cause thick mucus and increased infection. They studied mouse models of cystic fibrosis, specifically looking at a lipid that regulates cell death and inflammation. By using a drug that is used as an antidepressant to block this lipid, they found a reduction in lung infection in the mice. [click to continue...]

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April is Organ Donation Month

by Eileen on April 5, 2008

April is National Donate a Life Month, focusing on increasing awareness for organ donation. The medical advancements that allow transplant surgeries have had a great impact on the lives of many who suffer from different conditions. With regards to cystic fibrosis, the improvements in lung transplants have enabled patients to live long after their original lungs deteriorated from infections. [click to continue...]

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Why We Fundraise

by Eileen on April 2, 2008

How Donating to Charites that Focus on Efficiency and Results can Make a Difference to CF Medicine

Big Pharma ~ the pharmaceutical industry. No doubt it creates drugs that can improve the lives of millions of people, but it definitely is also a money-making machine that thrives on churning out drugs with a high demand. This means a huge focus on drugs for conditions that affect a large number of people, like cancer or diabetes.

So what about the little guys?

Cystic fibrosis afflicts only 35,000 people in the US. A huge milestone in CF research was the discovery of the CFTR gene that causes the disease in 1989. At the time, CF families became very hopeful for the development of new therapies that could stem from this new knowledge. However, with such small market potential, the big drug companies did not take on the challenge. [click to continue...]

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Phase 2a Clinical Results Show Promising Results in CFTR Function

Recently, the pharmaceutical company Vertex released news of exciting progress from the Phase 2a clinical trial for their drug Vx-770. This oral drug may be the first to successfully target the actual genetic defect for patients who carry the G551D mutation. This mutation causes a defect in the cystic fibrosis transmembrane conductance regulator (CFTR) - the ion channel that allows chloride to pass through cells - so that chloride channels are prevented from crossing through the cell membranes. [click to continue...]

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Milestones in Cystic Fibrosis Medicine

by Eileen on March 25, 2008

The 20th century saw a great deal of progress in the field of medicine with the advent of advancements such as antibiotics, vaccines, organ transplants, and genetic research. Advancements in medical knowledge affected the prognosis of cystic fibrosis quite notably over the past 60 years. Consider that in the 1930s, most patients with CF died in infancy; thirty years ago, the life expectancy rose to twenty years; and today, the median life expectancy is 37 years. As CF patients live longer and longer, the medical advancements have been coming more and more rapidly. Here is a brief overview of some of the most important milestones in research of cystic fibrosis treatments: [click to continue...]

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Balancing Optimism and Realism

by Eileen on March 20, 2008

The battle between the optimist and the pessimist is a classic argument, perhaps most commonly described with the “glass half full” vs. “glass half empty” paradigm. An optimist always sees the bright side of any challenging situation, while the pessimist sees only the difficulties ahead. The optimist may accuse the pessimist of being unnecessarily negative and cynical, while the pessimist may accuse the optimist of ignoring reality. This divide can become overwhelmingly apparent particularly when facing a challenge such as a disease like cystic fibrosis. [click to continue...]

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