These drugs will improve lung function for people with CF and give CF'ers a "normal" life-span!! This will not be a "cure" but will liken CF to what Asthma looks like.
She said that Dr. Beall from the CF foundation stood up in front of CF volunteers (many of them parents) and stated that he believes the corrector drug will be going the FDA for approval by 2012!! She said that they are seeing so much great data back from the clinicals: average person experiencing 9-12% increased lung function!! And one 28 year old she met had 20% improvement!!
Tears flow to think about never having to hear the words "Life Span" again! CF parents.....can you just imagine???!!!
My contact and her boss from National are coming to our area for a CF mom's group in Pensacola next week. She personally invited me to come to hear in more depth what this news means for us! This will be my first CF mom's group meeting and I'm excited about it.
I will be sure to pass it along! What a great day!!
2012 People!!! Thats a year and a half!!
Please join me in prayer for the Dr's and researchers working on this, this would be a true miracle for our family and for so many others!!
~krista
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This Nana says Praise the Lord!
ReplyDeletelove you! Mom
Amazing!! I pray every single day for the new drugs, treatments, and trials. Which one are you talking about? Is it mutation specific?
ReplyDeleteAn answer to all our prayers. Just goes to show what all the fundraising contributes to.
ReplyDeleteHey Krista~
ReplyDeleteI think we may have talked on CL before, but I am Michaela and I live in Milton. Logan, my 8 month old, has CF. I am SOOOOO excited and encouraged by this news!!! He is also a DDF508. I have never been to one of the Cf mom's meetings before either. I have wanted to go. Could you pass the info along to me about this one. I would LOVE to hear what all is said. I need some encouragement!!!! Thank you!!!
Hey Michaela,
ReplyDeleteI go to the CF Mom's meeting's as well and it is going to be tomorrow at 6:30 pm in pensacola, FL at the Olive Garden. Hope to see you there and Krista as well.
Coleen (mom to a 2.5 yr old cfer)
Thanks Coleen!!! I really want to come.....have to see if I can get my parents to watch the kids. My husband is playing softball for our church league. Thanks for the info and hopefully I will see you there!!!
ReplyDelete