tag:blogger.com,1999:blog-7535774120903384819.post6509833441890971790..comments2023-12-27T00:26:40.602-08:00Comments on Possibilities: Eye of the StormRebeccahttp://www.blogger.com/profile/01834134399653596127noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-7535774120903384819.post-36192872694419385412019-07-08T19:53:08.567-07:002019-07-08T19:53:08.567-07:00I recently found many useful information in your w...I recently found many useful information in your website especially this blog page. Among the lots of comments on your articles. Thanks for sharing.<a href="https://www.webstagram.one/" title="webstagram" rel="nofollow">webstagram</a> Sophie Gracehttps://www.blogger.com/profile/09769321133171248409noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-30928793598079823552018-10-24T16:35:32.180-07:002018-10-24T16:35:32.180-07:00You have done a brilliant job making sure that peo...You have done a brilliant job making sure that people understand where you are coming from. And let me tell you, I get it. Please post more updates to cure.<a href="https://yaldoeyecenter.com" rel="nofollow">yaldoeyecenter.com</a><br />John brahamhttps://www.blogger.com/profile/17022175466412097956noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-44753133334987967562017-01-12T01:45:09.335-08:002017-01-12T01:45:09.335-08:00michael kors handbags outlet
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That G551D mutation is like a golden ti...Hi Kelly, <br />That G551D mutation is like a golden ticket! Brady is so healthy and doing fantastic. Your son will get Kalydeco much younger than he did-- I'm sure it will be FDA approved for 2 year olds by the time he reaches his second birthday. I think I found you on Facebook and sent a friend request. I'm more than happy to chat or answer any questions you might have! I promise to keep the good news coming!Rebeccahttps://www.blogger.com/profile/01834134399653596127noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-36860529112793130002012-06-24T20:35:02.944-07:002012-06-24T20:35:02.944-07:00Hi Rebecca,
My son is 2 months old and was diagno...Hi Rebecca,<br /><br />My son is 2 months old and was diagnosed DF508 and G551D through newborn screening. Your blog is so inspirational, and I love to read Brady's story. Many times I've felt that I'm reading my own story. Before our sweat test, I asked our pediatrician to tell me if two mutations were detected (since we live in Illinois and they DNA test if IRT is elevated). My world stopped as he read "Delta F508 and G551D..." At that seemingly tragic moment, I didn't know that we were actually given a gift. I feel so fortunate that Trevor is G551D and will be eligible for Kalydeco, all thanks to the CFF. We found out at clinic that trials will soon begin for kids ages 2-5, how exciting!<br /><br />Like Rob, I would really love hear all the awesome POSSIBILITIES and promise of treating the basic defect. Honestly, it's what keeps me going. Can we connect on Facebook (Kelly McGuire Larson) or exchange emails...how can we exchange privately? Please posting about Brady...love to hear about his progress!<br /><br />KellyKellyhttps://www.blogger.com/profile/12419108083466581105noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-75172360077399353812012-06-24T20:04:07.388-07:002012-06-24T20:04:07.388-07:00This comment has been removed by the author.Kellyhttps://www.blogger.com/profile/12419108083466581105noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-60308923777571700232012-06-23T11:52:59.218-07:002012-06-23T11:52:59.218-07:00Great to know, Jo! Thanks for alerting me. And th...Great to know, Jo! Thanks for alerting me. And that's fantastic news about your son. I really do feel incredibly lucky that Kalydeco seems to be getting such great results, and that it seems our daughter will be able to take advantage of it.The Samsotshttps://www.blogger.com/profile/15112221966106559726noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-11035756168273294122012-06-23T11:50:08.188-07:002012-06-23T11:50:08.188-07:00Thanks so much, Rebecca! I'd rather not post ...Thanks so much, Rebecca! I'd rather not post my email in a public forum, but I'm the only Rob Samsot on Facebook, if you want to reach me on there. Really looking forward to catching up - thanks again!<br /><br />RobThe Samsotshttps://www.blogger.com/profile/15112221966106559726noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-5601215129528452832012-06-22T22:05:57.619-07:002012-06-22T22:05:57.619-07:00Rob, please give me an email address so I can send...Rob, please give me an email address so I can send you my number. I have so much positive news and hope to share with you and your wife. I am traveling now, but will be back home Sunday afternoon. Can't wait to talk to you both!Rebeccahttps://www.blogger.com/profile/01834134399653596127noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-23763104167164707562012-06-22T20:27:06.286-07:002012-06-22T20:27:06.286-07:00HI Rob there is a FB site re Kalydeco. My children...HI Rob there is a FB site re Kalydeco. My children have the same mutations as your daughter. My son has been on Kalydeco for 2.5 years (he has been on it during the trial). He is 32. He is doing amazingly well and I can tell you that you no longer have to fear cf because your daughter has the G551D mutation. If you are in the US you should be able to access the drug some time soon (Im not sure of the ages). If you're in another country you may have a bit longer to wait, but it's on it's way so rejoice!<br />http://www.facebook.com/groups/153375788050316/Johttps://www.blogger.com/profile/14981040378526979398noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-16001708047622639512012-06-22T07:01:27.122-07:002012-06-22T07:01:27.122-07:00Hi Rebecca, I just came across your blog and my he...Hi Rebecca, I just came across your blog and my head is spinning. My wife and I had a baby girl just one month ago today, and she was diagnosed with CF (mutations G551D and Delta F508) through the newborn screen. It was devastating news, and we've been on an emotional roller coaster. Seeing your blog, though, definitely puts me at one of the high points on that coaster. I plan to read all your blog posts from the beginning, but is there any chance you might be open to talking to me and my wife at some point as well? We're still just trying to get our minds wrapped around all this, but seeing that another child with the same mutations our daughter has is doing so well with Kalydeco is immensely exciting! Thanks so much -RobThe Samsotshttps://www.blogger.com/profile/15112221966106559726noreply@blogger.comtag:blogger.com,1999:blog-7535774120903384819.post-30872967260804867322012-06-19T07:29:54.620-07:002012-06-19T07:29:54.620-07:00Keep fighting Brady! We are all so proud of your p...Keep fighting Brady! We are all so proud of your progress!Anonymoushttps://www.blogger.com/profile/17061022052158466391noreply@blogger.com