tag:blogger.com,1999:blog-3492210429690434816.post8737608909013124813..comments2023-11-03T05:03:10.063-07:00Comments on Groettum Family: I woke up with a headacheUnknownnoreply@blogger.comBlogger8125tag:blogger.com,1999:blog-3492210429690434816.post-76501974535386423632012-02-02T15:19:47.325-08:002012-02-02T15:19:47.325-08:00I agree totally. It has been so emotional, but so...I agree totally. It has been so emotional, but so thrilling. Great gratitude to so many, great hopes as well.Valerienoreply@blogger.comtag:blogger.com,1999:blog-3492210429690434816.post-74197621747161669732012-02-02T14:54:56.647-08:002012-02-02T14:54:56.647-08:00Alright,so this is the first time I've ever po...Alright,so this is the first time I've ever posted on a blog...not even sure I'm doing it right but... I just had to say how much I AGREE WITH YOU!!! I am a mother of a 2 1/2 year old boy with CF and I have read many blog posts, Facebook posts, etc. ALL with negative comments and "lawyer" talk. What happened to the huge sigh of relief, the overwhelming feeling of happiness, and the hope! I personally bawled by eyes out when I heard the news! Such joy! Our family will not benefit from this drug...right now. But it is paving the way for us in the future. We are grateful and will stop at nothing to see that everyone has their blue lightning! This includes, studies, research, fundraising and education. Thank you for sharing your opinion and helping one momma realize I am not in the twilight zone!Kettinoreply@blogger.comtag:blogger.com,1999:blog-3492210429690434816.post-89619170533853076032012-02-01T20:51:49.884-08:002012-02-01T20:51:49.884-08:00Congratulations for a brilliant post, the best I h...Congratulations for a brilliant post, the best I have read yet - I love your attitude and outlook! And of course, awesome that your little man can benefit! This approval is so exciting for all with CF and that is something to celebrate! My little Tom is DDF508 and I look at this development as the first step in his future! Big cheers to you and your family - wise words! Natalie xNataliehttps://www.blogger.com/profile/04835756685178427484noreply@blogger.comtag:blogger.com,1999:blog-3492210429690434816.post-13034660993298954282012-02-01T13:37:36.112-08:002012-02-01T13:37:36.112-08:00Great job! Years and years of health to all our CF...Great job! Years and years of health to all our CF warriors...I can't wait to get Aidan in the Delta study! A little EMLA cream goes a long way for the blood draws, we use it all the time! MeganAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3492210429690434816.post-47755247587194948262012-02-01T10:15:15.201-08:002012-02-01T10:15:15.201-08:00AMEN sister! Well said!AMEN sister! Well said!Marlahttps://www.blogger.com/profile/05589284904467490876noreply@blogger.comtag:blogger.com,1999:blog-3492210429690434816.post-30912406149674572592012-02-01T09:22:14.994-08:002012-02-01T09:22:14.994-08:00I have heard from people who were in the 770 study...I have heard from people who were in the 770 study that their pancreatic insufficiency was reversed by this drug. They said as long at there wasn't scarring and the pathways in the pancreas were just blocked, the drug worked to reverse the blockage and they no longer needed the enzymes. Either way, I think it's great, but wouldn't it be awesome to be able to get off the enzymes too!kbochniakhttps://www.blogger.com/profile/16224267799914137152noreply@blogger.comtag:blogger.com,1999:blog-3492210429690434816.post-41887377831331644492012-02-01T08:51:42.816-08:002012-02-01T08:51:42.816-08:00I confused, what are people "lawyering up&quo...I confused, what are people "lawyering up" for? This is supposed to be exciting news!<br /><br />I can't see what could be wrong with wanting to participate in the research study. My husband is on the waiting list for the study for his mutation. If he gets in, it means he gets to start taking the med sooner AND help get it approved for everyone else!Kristinhttp://www.kristinology.com/noreply@blogger.comtag:blogger.com,1999:blog-3492210429690434816.post-70847423574235204532012-02-01T08:47:14.399-08:002012-02-01T08:47:14.399-08:00I'm sure that by the time Gavin is 5-6 and the...I'm sure that by the time Gavin is 5-6 and the F508 geneotype has their version on the market with over 60% saturation, the price will be lowered for everyone. They just need to make up for so many years of R&D and trials.<br /><br />This is going to be a good year for CF.Jesse Petersen (CF Fatboy)https://www.blogger.com/profile/13300381673876261511noreply@blogger.com