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Our family, living with CF
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Watching History Being Made Sucks | Our ΔF508 Life
https://ourf508life.wordpress.com/2014/06/11/watching-history-being-made-sucks
Our ΔF508 Life. Our family, living with CF. Watching History Being Made Sucks. June 11, 2014. In a few weeks (or maybe a month, though I don’t think I can make it that long, so let’s say a few weeks) Vertex will release results of the phase III vx-809/Kalydeco trial. If the results are good, vx-809 will be headed for FDA approval and a new name (though its current generic name, Lumacaftor, is sort of pretty, as far as drug names go). What do positive results mean to people in the CF community? You have d...
April | 2013 | Our ΔF508 Life
https://ourf508life.wordpress.com/2013/04
Our ΔF508 Life. Our family, living with CF. Monthly Archives: April 2013. April 25, 2013. Keep Calm and Carry On. But there are months to wait before trial results are out, and in the meantime a baby whose new favorite toy is the electrical outlet. Spring is here, after a long winter that would have rivaled Little House on the Prairie (Little Fourplex on the Prairie? April 19, 2013. VX-661 and 2nd Gen CF Treatments. To use as part of a trio of drugs than 809. April 18, 2013. It is snowing here. It is...
March | 2013 | Our ΔF508 Life
https://ourf508life.wordpress.com/2013/03
Our ΔF508 Life. Our family, living with CF. Monthly Archives: March 2013. March 28, 2013. Sometimes I picture myself as this giant, or this massive shadow, dwarfing Alma and her little shadow. Next to her I am enormous, and clumsy. The greatest relief of my life will be that day that I know is coming very soon, whether from here. When I can relax a little, and for the first time in my life realize how much time is left, and how wonderful a gift that is. March 27, 2013. Six months. Happy half birthday...
In the New Year | Our ΔF508 Life
https://ourf508life.wordpress.com/2013/12/30/in-the-new-year
Our ΔF508 Life. Our family, living with CF. In the New Year. December 30, 2013. To say that there is a lot of expectation built up for this year is an understatement. Sometimes I wonder how we will manage this year. How do you do your day to day life knowing that things this dramatic, this life changing may be around the corner. Or, instead, a great disappointment. Become a doctor, a mother. Travel the world. This is what my life as a parent of a child with CF is:. Looking at the other children at daycar...
October | 2013 | Our ΔF508 Life
https://ourf508life.wordpress.com/2013/10
Our ΔF508 Life. Our family, living with CF. Monthly Archives: October 2013. October 3, 2013. What follows is a first hand account of someone who is enrolled in the phase 3 vx-809 trials. He’s ddf508. I suspect this blog will get taken down at some point so I thought I’d copy and paste it here just in case. I don’t know this guy, can’t vouch for the accuracy of any of it. But it makes me hope…. Http:/ colindshots.blogspot.com/. By the middle of the week I started feeling very tired like I was getting a co...
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“ … dance one year in, kiss one goodbye.” | Exit, pursued by a bear
https://brilliantbluek.wordpress.com/2014/01/01/dance-one-year-in-kiss-one-goodbye
Exit, pursued by a bear. A tale of little blue wonders. 8230; dance one year in, kiss one goodbye. I sit here, lounging in bed (by choice, not illness) considering what was, how it has been, and what is to come. How is it that one small blue wonder-pill can flip my 32 years on the planet on its head and bring so much happiness to so many? So 2013, thank you and goodbye. I can only do so in the knowledge that 2014 could be even more special for even for people. January 1, 2014. Leave a Reply Cancel reply.
The lull of the bear free bubble … | Exit, pursued by a bear
https://brilliantbluek.wordpress.com/2014/06/05/the-lull-of-the-bear-free-bubble
Exit, pursued by a bear. A tale of little blue wonders. The lull of the bear free bubble …. Oh yeah, I have CF. I have been living in a lovely Kalydeco coloured bubble for over a year now and it has been blissful. I am in a constant state of gratitude for this drug especially when my fellow CF sufferers in Australia and Canada (although the latter is hopefully moving forward) are still. All I can do is light a candle for her and shut the fuck up about my cough. June 5, 2014. Finally … →. You are commenti...
Exit, pursued by a bear | A tale of little blue wonders | Page 2
https://brilliantbluek.wordpress.com/page/2
Exit, pursued by a bear. A tale of little blue wonders. But mark Easter 2013: a red-letter holiday! Not only have I not been ill (at all, not even the hint of a sniffle) I have been putting my new found energy to good use. I have just completed my third week at the gym going every other day (even Sundays) I haven’t fallen asleep (even after driving long distances) and I feel great. My game is totally changed! And tagged Cystic Fibrosis. April 14, 2013. And why don’t more do pay as you go? I don’t run....
about this site | Late Industrial Literature
https://robbstlawrence.wordpress.com/about
On literature, labor, environment and the figures that tie them together. Written by Robb St. Lawrence, PhD Candidate at the University of Minnesota. I also have a daughter, Alma, who is riding me like a tauntaun in the picture below:. What else would you like to know? Leave a Reply Cancel reply. Enter your comment here. Fill in your details below or click an icon to log in:. Address never made public). You are commenting using your WordPress.com account. ( Log Out. Notify me of new comments via email.
Ups and Middles (definitely not downs) | Exit, pursued by a bear
https://brilliantbluek.wordpress.com/2013/04/28/ups-and-middles-definitely-not-downs
Exit, pursued by a bear. A tale of little blue wonders. Ups and Middles (definitely not downs). I’ve said it before and I’ll say it again. Life moves pretty fast. If you don’t stop and look around once in a while, you might miss it. Got dressed and went to Zumba a perfect example of my usual brand of bloody mindedness. Ketamin – strangely and unfortunately also know as Special K. April 28, 2013. Bad blogger →. Leave a Reply Cancel reply. Enter your comment here. Address never made public). Our ΔF508...
Smugness – sponsored by Kalydeco | Exit, pursued by a bear
https://brilliantbluek.wordpress.com/2014/03/16/smugness-sponsored-by-kalydeco
Exit, pursued by a bear. A tale of little blue wonders. Smugness – sponsored by Kalydeco. Petulant is the best way to describe my attitude to exercise in the past. I am from the school of thought that says if you try something and the time comes when you realise you’ll never be brilliant at it, stop. What’s the point? And then Kalydeco came into my life. So, bring on the un-dead, Freddy Kruger and any other film/tv nasty* – I’ve got a pot of blue wonder and am ready to run! And tagged Cystic Fibrosis.
jhp1000 | Exit, pursued by a bear
https://brilliantbluek.wordpress.com/author/jhp1000
Exit, pursued by a bear. A tale of little blue wonders. Nothing beyond the basics - 33 year old Drama teacher from North West England with Cystic Fibrosis. Managed a 5k in a straight run. Istill don’t enjoy running like some do but I’ll stick with it and hopefully my time will get progressively faster thanks to my new and improved Kalydeco lungs. I am so so grateful for these brilliant blue pills. And tagged Cystic Fibrosis. August 29, 2014. The lull of the bear free bubble …. Oh yeah, I have CF. Week of...
Finally … | Exit, pursued by a bear
https://brilliantbluek.wordpress.com/2014/08/29/finally
Exit, pursued by a bear. A tale of little blue wonders. Managed a 5k in a straight run. Istill don’t enjoy running like some do but I’ll stick with it and hopefully my time will get progressively faster thanks to my new and improved Kalydeco lungs. I am so so grateful for these brilliant blue pills. And tagged Cystic Fibrosis. August 29, 2014. The lull of the bear free bubble …. September 6, 2014 at 11:03 pm. An amazing effort. Good on you. September 7, 2014 at 7:49 am. Great results on the the 5K! Outdo...
K-Day | Exit, pursued by a bear
https://brilliantbluek.wordpress.com/2014/01/28/k-day
Exit, pursued by a bear. A tale of little blue wonders. It really doesn’t seem like a year has passed since I got my grubby (yet eternally grateful) mitts on this wonder drug and I feel blessed. Scrap that, I always felt blessed. Blessed that my health wasn’t too bad. Blessed that I had a job. Blessed that I could pretty much do what I wanted when I wanted. Blessed that I had amazing parents, a wonderful chap and a brilliant medical team who I knew would care for me no matter what. I can’t believe ...
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To tree or not to tree? The fight to protect primary forests versus the creation of new forest habitats. Written by Dr. Gary Shapiro. Published: 03 April 2016. Read more: To tree or not to tree? The fight to protect primary forests versus the creation of new forest. How Kusasi's cheek pads made him 'King' at Camp Leakey. Written by Dr. Gary Shapiro. Published: 31 August 2015. By Graham Banes, Ph.D. 1978, however, the Camp was not overrun with Westerners. On that day, there was only one. At Camp Leakey on...
OURFConsultancy LLPCreative Solutions for the 21st Century
Creative Solutions for the 21st Century. Creative solutions for the 21st Century. Workshops: Ink.Journey Into Self. Register for a free ticket to Opening of Journey In Ink Art Exhibition at The Arts House.
OURF! | Creative Solutions for 21st Century
Creative Solutions for 21st Century. Standing firm against unreasonable demands…. September 13, 2012. In 21st century competencies. And tagged MOE Workplan 2012. Each time I read about hot education issues in the papers, iToday or even a FB post, I feel the need to blog. Tuition – should we engage tutors or not? Tuition centres overcharge. Tuition teachers are not qualified. They are out to make a fast buck. A boy get his hair cut by a school teacher. His mum files a police report. The MoA is a unique re...
little monster
A celebration of all things charlie jorge. Monday, December 11, 2006. Wow I cannot believe that its been over a year since our last post! How lazy are we? As you can imagine, much has happened in over a year in the life of our little boy - who has developed into a fully fledged Monster! Below are a few photos from our holiday, I would like to say that it was fully relaxing and recharging but I would be fibbing! Good luck to Jake and Karen. And soon realised that sand doesnt taste very nice. Posted by fir...
Our ΔF508 Life | Our family, living with CF
Our ΔF508 Life. Our family, living with CF. July 14, 2014. So You’ve Found Out Your Unborn Baby Has Cystic Fibrosis. Or that you and your partner both carry the cystic fibrosis gene (or I should say one of the many genes that can cause CF). I’ve thought a lot about this problem since Alma was born. What does it mean to know that your child will, or that your child might, have cystic fibrosis? It’s something that sometimes gets framed as an “ impossible choice. So What can I contribute instead. Ok What I ...
Ourfa-de-becem's blog - Fonfon l'haricot - Skyrock.com
Un rayon de soleil dans ma vie et plus encore 3. 10/02/2011 at 8:38 AM. 24/06/2011 at 7:15 AM. Subscribe to my blog! Je crois que c'est à partir de cette période que tu as eu t'as crise d'ado. Les progrès sont là malgré tes petits moments rebelle. Mais que de moments bonheur en ta compagnie que je n'échangerais contre rien au monde. Please enter the sequence of characters in the field below. Posted on Friday, 24 June 2011 at 7:15 AM. Align=center ]06 septembre 2007. Déjà 10 mois a tes cotés. 8226; 4 ans.
ایران ما
مطالب و اخبار از سراسر دنیا. علی مصلی نژاد-محمد نیک نیا. نامه پدر -هدیه استاد بابك رادمنش به مناسبت روز پدر. استاد بابك رادمنش به مناسبت روز پدر ، ترانه ای به عنوان (نامه پدر) که با صدای خود ایشان اجرا شده است را برای تقدیم به همه پدران ایران زمین بخصوص پدران چشم انتظار منتشر نمود. این شعر و اهنگ در خصوص والدین عزیزی است که سالها از فرزندان خود دور بوده اند و چشم انتظار بازگشت آنها به وطن هستند. ترانه (نامه پدر) با صدای بابك رادمنش. تقدیم به همه پدران سرزمینم. بخصوص پدران چشم انتظار. نامه ای که مینویسم.
The Pruitts
Thursday, May 5, 2011. She also had a party in Logan with Anthony and Shanel's family. She is a little spoiled, but we love this Girl! So I missed a few important things in 2010. Just Alyssa's 7th B-day, Easter, Lake Powell, Landen's 4th birthday and Christmas (I am sure there are a bunch more things too). After debating whether to go back and cover it all or to just start from now, my lazy side won and I have decided to start fresh.again! Saturday, February 5, 2011. Here is our new house! Everything nee...
Our fab course
Course design and evaluation group blog. Friday, 1 May 2009. Brief feedback to group 6 - Ann, Tom, Paul - Tourism and Photography, uploaded on online campus. Feedback received from Malcolm and Group 4. Lots to talk about at next meeting . Tuesday, 28 April 2009. Material and timeschedules are uploaded on google docs. Wednesday, 22 April 2009. The course/programme design document for the Diploma in Large-Scale Sports Event Management that the group created has been uploaded to the olc! Alex is in the proc...
