The daily quest to gain weight
BETHESDA, Md., Aug. 6 /PRNewswire-USNewswire/ — The U.S. Senate last night passed the “Improving Access to Clinical Trials Act” (I-ACT), a bipartisan piece of legislation championed by the Cystic Fibrosis Foundation, its advocates and 120 other health advocacy organizations.
The legislation enables patients with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits.
We have ordered 500 silicone awareness bracelets this morning. As soon as I finish creating the PayPal side of things and the graphics, we will begin pre-ordering.
Since we did not receive 50 questionnaires, I will be picking one at random to receive one free bracelet and one person to receive 3 free bracelets to fulfill my promises of a prize.
I will announce pre-order sales when the page is set up. We are very excited and can’t wait to see them when they arrive.
Word from her uncle and sister says that it was a textbook surgery and that her new, pink lungs are a perfect fit for her. We are all waiting with bated breath until she makes her own first communication. Knowing her, it won’t be long. You know Beautiful will have instructions to leave my iPhone on my lap at all times if I ever need to get a lung transplant.
Go Beth, go! Cystic Gal
We’ve all seen the rise in the life expectancy of CFers over our lifetimes. Some are still with us, some are not, but the percentage of those living on and living more normal lives is on the rise every decade. New meds by Vertex are showing huge gains in lung function in many patients, and the drugs are in phase 3 trials, moving on to the next set of patients with even more decreased lung function soon.
New drugs for cystic fibrosis bring hope
Four drugs targeting the fundamental cause of CF made by Vertex Pharmaceuticals (VRTX) , Pharmaxis (AU:PXS) , PTC Therapeutics, and Inspire Pharmaceuticals (ISPH) are in phase 3 clinical trials
CF Fatboy is a small business owner flourishing in Tampa, FL. He and Beautiful have been married for 5 years and are doing everything they can to ensure they have a long life together.
I have the ΔF508/ΔF508 mutation, so, while it's not a mild CF by any standard, I will be likely blessed with the full effects of a genetic treatment or cure. If you have any questions, please don't hesitate to contact me via my contact form.
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