Great News!!

Today after work, I went back to Fashion Bug to see if they were still interested in doing Pin-ups for Cystic Fibrosis and they said YES!! I was floored!! This is the first place that said Yes and first place I got to do Pin-ups(other than my husbands store)!! I was so excited that I forgot to explain it all and I forgot to give a little poster about it. I'll have to go back later if they are not selling without it. What do you do for Pin-ups? I couldn't wait to post this good news!!!

Now I'll answer some questions that I got on my last post about our clinic visit...

• Q: How do you give Lil' Chris his Prevacid? A: It is called a solutab. It dissolves in water. We put the tablet in a syringe and then suck up some water and then wait a few seconds for it to dissolve and then we shoot it in his mouth. (The "shoot"ing part sounds bad, but it's really not;) Lil' Chris loves the taste of it! The samples that we got from the clinic are in capsule form like the enzymes. We open them and sprinkle it over some applesauce.
• Q: What does the hat say? A: "Help Cure Cystic Fibrosis" and on the bottom it says this blog site..."acure4lilchris.com".
• Q: Where did you get that hat? A: My little secret;-) Actually I would tell you, but it is part of the prize you win on my other blog...thechallengediet.blogspot.com. Now don't you all wish that you joined????? lol
• Q: Was it hard transitioning him from taking his enzymes as the little seeds to taking them in the capsule? A: Not really! I saw one day the Angela had tried it on Phenny and it worked, so I gave it a try and it worked for Lil' Chris too! I was shocked! We probably could have done it a long time ago. Thanks Angela! I still give it to him with applesauce though...force of habit I guess. Next step...swallowing them with water:0
• Q: How is Lil' Chris so healthy? A: I think it mainly has to do with the newborn screening. Early diagnosis seems to be key in CFers. Thank the Lord our state started testing for CF in the newborn screening just 10 months before Lil' Chris was born. We are very fortunate.

Today there was a really good article about CF in the New York Times. Click here for the whole article. Below is just the end of the article. It talks about the new drugs they are working on. It's so neat to see all of our hard work fundraising for Great Strides in action. I really think a CURE is in the near future;-)

Bill Elder, 21, who has to spend nearly two hours a day clearing his lungs, is certain that early testing would have helped him. He went eight years without a diagnosis and, more important, without treatment, because he was born in Nebraska, which started testing infants in 2006. “It should be nationwide,” said Mr. Elder, a Stanford University undergraduate.

Researchers agree there is still a lot of work to do. “We need to focus not only on developing therapies that treat the downstream effects of disease but also on the therapies that are further upstream — those that can intervene early and either improve the complications that arise or prevent them entirely,” Dr. Acton said.

Twenty years ago, researchers thought they were on the cusp of such a discovery after scientists located the faulty gene that causes the disease. It was a huge breakthrough, raising hopes that investigators might be able to use gene therapy — a method that delivers healthy genes back into the body’s cells and tissues — to find a cure.

But that line of research simply didn’t pay off.

Today, physicians say the most exciting avenue of research involve new drugs that could address the root of the problem.

Over the last decade, for example, scientists have been testing an experimental compound called VX-770, which may be able to fix the defective protein that causes the surface of the lungs to become so dehydrated in cystic fibrosis. It works by essentially tricking the cells that line the airway into secreting salt, which causes water to flow back into the airway. By restoring the proper balance of salt and water, the lungs become hydrated, the mucus thins out and harmful bacteria are more easily washed away.

“I do think we will see a cure,” said Dr. Richard Boucher, director of the Cystic Fibrosis/Pulmonary Research and Treatment Center at the University of North Carolina at Chapel Hill. “These therapies that hydrate the cystic fibrosis airway surface may be able to stop the progression of the disease in adults. And, very excitingly, in babies you may even be able to prevent it.”

Dr. Boucher says the likelihood that this will happen in the next 5 to 10 years is “extremely high.” But many scientists also warn that even the most promising of drugs can fail in late-stage testing. There are now 30 or so drugs in the pipeline, including VX-809, another compound that helps correct the defective cystic fibrosis gene. If one fails, another might make it through eventually.

Research like this is also what keeps patients like Ms. Schaller, the runner, so hopeful. “When I was diagnosed I was told I wouldn’t graduate high school,” she said. “But here I am. We are living into adulthood and leading full lives.”

Keep up the GREAT WORK researchers!!!
M
PS. I'll post later what my hubby is doing to raise money;-) He had a great idea!