Tuesday, January 11, 2011

The Cure Around the Corner

Almost every time I open my blog, the song Blackbird starts playing. "Blackbird singing in the dead of night, take these broken wings and learn to fly...".. It just seems to perfectly fitting. For Drew and for me. This certainly isn't the life that I had imagined, but at the same time I really can't imagine it any different. I cannot believe all that Drew has overcome this year. I can't believe that hes almost 10 months old...almost a year! Frankly, I can't believe we survived either. Twins = no fun whatsoever for about 8 months. Not even a little bit. But to look at Drew today, to see his smiling face and his will and determination to do the smallest of tasks - pick up a cheerio, wrestle Ella for his monkey, grab back the toy that Lily stole from him - it makes my heart smile. That boy takes it all in stride. He's not healthy. He's got funky lungs. He's got extra mucus in those funky lungs. But he takes every one of his many breathing treatments like a champ. I don't know many other 10mo. olds who would sit still for 45 minutes with a mask strapped to their face and not even try to pull it off. Certainly neither of the girls could handle this. But Drew is different. Hes so low maintenance. And hes such a momma's boy (and i secretly LOVE it). He'll melt your heart with his smile and his glowing big blue eyes. Its truly unbelievable to look at him today and picture where we were last March.

I'm getting all reminiscent as I put together our plan for this years Great Strides walks. I made a video (have Kleenex nearby) and I've written some letters. I want everyone to know how personal it is to us, and how much a donation means not only to us but to the thousands of other kids and adults struggling with CF everyday. The CF Foundation (and I've said this before) relies on donations alone - donations from me and from you and from events like Great Strides and whatever corporate sponsorships they get - because CF is not federally funded. Research is what Drew needs. Research is what is going to find a cure for this. They are so so very close. A cure means no more breathing treatments for Drew. A cure means not having to take a handful of pills before every bottle or meal. A cure means that he lives the same life as Ella and Lily and your sons and daughters. But the government does not provide any funding toward such a cure because this disease only effects 30,000 people in our country. It makes me so angry when I think about that. THIRTY THOUSAND LIVES ARE AT RISK because there is not enough money to support the life saving research that will find the cure. They are so close, seriously. Look at this information from the CF website:

The Cystic Fibrosis Foundation’s key metric for measuring success is our drug development pipeline. Our mission is to develop new therapies and a cure for cystic fibrosis. To achieve this goal, we need to have a broad range of potential drugs in development that attack the disease from every angle because many drugs may never make it to market.

CF is a complex disease and therapies must target problems in the airways and the digestive system. In the CF drug development pipeline, there also are promising new therapies designed to fix the cause of CF — a faulty gene and/or its faulty protein product.

The CF Foundation seeks to increase its odds of success by keeping this pipeline “stocked,” closely evaluating and tracking the progress of each therapy as it moves through development and — at the same time — pursuing new opportunities for future drugs to be developed.

Below is a "snapshot" of those potential CF therapies that are currently in development as of January 10, 2011.

Let me tell you quickly what some of this below means before you look at it. Gene therapy is what they believe will cure CF. There is a cure for CF. Doctors and scientists have found a way to correct the faulty gene. They have not yet found a way to get it into patients and stick. CFTR Modulation essentially corrects the basic defect of CF, allowing chloride and sodium to move properly in and out of cells lining the lungs and other organs. In 2012, some of these drugs will become available to patients. In 2012, if enough support is raised for the CF Foundation to continue their research and clinical trials, Drew may be able to receive these medications and be symptom free. He will not be cured, but he will be better. This is how close we are. You can read more about this on the CFF website, or by clicking here.

Stay tuned for the rollout of our Great Strides campaign. I'm thinking the beginning of February so that we have 3 good months of fundraising. And just so you know, if you ask me how you can help, I will give you a LIST of ideas :)

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