spititoutblogspot.com

Spit It Out!

A patient perspective on developments in the treatment and management of Cystic Fibrosis. I'm a 39 year old living and working with CF and CF-related diabetes. Double F508del. FEV1 is currently 25%. My motto: "If it works, do more of it. If it doesn't work, don't do it. If you're not sure, do some experiments." Twitter: @oli rayner. Friday, 3 July 2015. Phase 2b Gene Therapy Results. There were no safety issues. Those with more severe disease (less than 70% FEV1) saw bigger effects but it is not clear wh...

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Spit It Out! | spititoutblogspot.com Reviews

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A patient perspective on developments in the treatment and management of Cystic Fibrosis. I'm a 39 year old living and working with CF and CF-related diabetes. Double F508del. FEV1 is currently 25%. My motto: If it works, do more of it. If it doesn't work, don't do it. If you're not sure, do some experiments. Twitter: @oli rayner. Friday, 3 July 2015. Phase 2b Gene Therapy Results. There were no safety issues. Those with more severe disease (less than 70% FEV1) saw bigger effects but it is not clear wh...

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2 labels

3 bronchitol

4 cf statistics

5 foundation models

6 gene therapy

7 kalydeco

8 living with cf

9 other cf blogs

10 physio

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Spit It Out! | spititoutblogspot.com Reviews

https://spititoutblogspot.com

A patient perspective on developments in the treatment and management of Cystic Fibrosis. I'm a 39 year old living and working with CF and CF-related diabetes. Double F508del. FEV1 is currently 25%. My motto: "If it works, do more of it. If it doesn't work, don't do it. If you're not sure, do some experiments." Twitter: @oli rayner. Friday, 3 July 2015. Phase 2b Gene Therapy Results. There were no safety issues. Those with more severe disease (less than 70% FEV1) saw bigger effects but it is not clear wh...

INTERNAL PAGES

spititoutblogspot.com

1

Spit It Out! : EURORDIS: Sounds Like a Plan, Yann!

http://www.spititoutblogspot.com/2013/03/eurordis-sounds-like-plan-yann.html

A patient perspective on developments in the treatment and management of Cystic Fibrosis. I'm a 39 year old living and working with CF and CF-related diabetes. Double F508del. FEV1 is currently 25%. My motto: "If it works, do more of it. If it doesn't work, don't do it. If you're not sure, do some experiments." Twitter: @oli rayner. Saturday, 2 March 2013. EURORDIS: Sounds Like a Plan, Yann! Why does it take so long after EMA Marketing Authorisation for drugs to reach patients? Why do people object to pa...

2

Spit It Out! : Travel Insurance and Oxygen

http://www.spititoutblogspot.com/2014/03/travel-insurance-and-oxygen.html

A patient perspective on developments in the treatment and management of Cystic Fibrosis. I'm a 39 year old living and working with CF and CF-related diabetes. Double F508del. FEV1 is currently 25%. My motto: "If it works, do more of it. If it doesn't work, don't do it. If you're not sure, do some experiments." Twitter: @oli rayner. Monday, 10 March 2014. Travel Insurance and Oxygen. I have spent many hours researching travel insurance and travel oxygen. Tel: 0844 5577980 (ask for Sophie). After getting ...

3

Spit It Out! : August 2013

http://www.spititoutblogspot.com/2013_08_01_archive.html

A patient perspective on developments in the treatment and management of Cystic Fibrosis. I'm a 39 year old living and working with CF and CF-related diabetes. Double F508del. FEV1 is currently 25%. My motto: "If it works, do more of it. If it doesn't work, don't do it. If you're not sure, do some experiments." Twitter: @oli rayner. Monday, 26 August 2013. Which CFTR mutations actually cause CF? How did you do this study? What is the relevance of the results? This information will be used by scientists s...

4

Spit It Out! : March 2014

http://www.spititoutblogspot.com/2014_03_01_archive.html

A patient perspective on developments in the treatment and management of Cystic Fibrosis. I'm a 39 year old living and working with CF and CF-related diabetes. Double F508del. FEV1 is currently 25%. My motto: "If it works, do more of it. If it doesn't work, don't do it. If you're not sure, do some experiments." Twitter: @oli rayner. Monday, 10 March 2014. Travel Insurance and Oxygen. I have spent many hours researching travel insurance and travel oxygen. Tel: 0844 5577980 (ask for Sophie). After getting ...

5

Spit It Out! : Bronchitol™: Power to the Patient

http://www.spititoutblogspot.com/2013/02/bronchitol-power-to-patient.html

A patient perspective on developments in the treatment and management of Cystic Fibrosis. I'm a 39 year old living and working with CF and CF-related diabetes. Double F508del. FEV1 is currently 25%. My motto: "If it works, do more of it. If it doesn't work, don't do it. If you're not sure, do some experiments." Twitter: @oli rayner. Sunday, 10 February 2013. Bronchitol™: Power to the Patient. Summary of PADAC’s Decision. Here is a summary of the reasoning behind the committee’s decision:. They felt the a...

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ourf508life.wordpress.com

July | 2014 | Our ΔF508 Life

https://ourf508life.wordpress.com/2014/07

Our ΔF508 Life. Our family, living with CF. Monthly Archives: July 2014. 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. Ok What I can s...

ourf508life.wordpress.com

So You’ve Found Out Your Unborn Baby Has Cystic Fibrosis. | Our ΔF508 Life

https://ourf508life.wordpress.com/2014/07/14/so-youve-found-out-your-unborn-baby-has-cystic-fibrosis

Our ΔF508 Life. Our family, living with CF. So You’ve Found Out Your Unborn Baby Has Cystic Fibrosis. July 14, 2014. 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 ...

ourf508life.wordpress.com

Our ΔF508 Life | Our family, living with CF | Page 2

https://ourf508life.wordpress.com/page/2

Our ΔF508 Life. Our family, living with CF. September 10, 2013. Today has been a hard day. Today I found out that a woman with CF who I know died. I didn’t know her well at all, and only knew her because she contacted a friend of mine when Alma was diagnosed. She was very kind and told me in that first awful week that there was a lot of hope for Alma. I didn’t hear much from her after that, though I saw her occasional posts on Facebook. And now she’s gone. What is the next exciting installment? When I se...

magicbluepill.wordpress.com

229 days of Kalydeco « magicbluepill

https://magicbluepill.wordpress.com/2013/05/08/229-days-of-kalydeco

A blog about Cystic Fibrosis and Kalydeco. Kalydeco and Other Mutations. Info for CFs on Kalydeco. 229 days of Kalydeco. May 8, 2013. May 30, 2013. Felt like being creative with the title so went with 229 days rather than almost 8 months. This is 458 magicbluepills. Pretty amazing what many small pills in a row can do. I had clinic yesterday and my FEV1 was 69%. Whilst not in the special 70s, it was 2.36L last time and 2.35L this time, so it really is an insignificant difference! It has been 6 months wit...

ourf508life.wordpress.com

Dramatic Irony | Our ΔF508 Life

https://ourf508life.wordpress.com/2013/10/01/dramatic-irony

Our ΔF508 Life. Our family, living with CF. October 1, 2013. Alma turned one last Friday. One! It’s coming, it’s really really bad and it’s coming for you, you just don’t know it. That I’d fail at a job? That a relationship might end? That someday, somehow I might lose someone when they were old and gray and had lived a long good life? Stupid. What stupid, ordinary things to worry about. What stupid ordinary things that character was mooning about on that stage before stupid fake scenery. Enter your comm...

ourf508life.wordpress.com

The Wilderness | Our ΔF508 Life

https://ourf508life.wordpress.com/2014/02/16/the-wilderness

Our ΔF508 Life. Our family, living with CF. February 16, 2014. I’m reading this book Zealot right now. It’s about the historical period that Jesus lived in. It’s really engaging and entertaining and, for someone who doesn’t know much about the life of Jesus, it’s been an easy-to-digest quick education. Now I too can speak authoritatively on what Jesus really taught. Kidding. How did we get to this place where I can say with a lot of confidence that I think my daughter will live a normal life, that we wil...

ourf508life.wordpress.com

December | 2013 | Our ΔF508 Life

https://ourf508life.wordpress.com/2013/12

Our ΔF508 Life. Our family, living with CF. Monthly Archives: December 2013. December 30, 2013. In the New Year. 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:. Lookin...

ourf508life.wordpress.com

September | 2013 | Our ΔF508 Life

https://ourf508life.wordpress.com/2013/09

Our ΔF508 Life. Our family, living with CF. Monthly Archives: September 2013. September 10, 2013. Today has been a hard day. Today I found out that a woman with CF who I know died. I didn’t know her well at all, and only knew her because she contacted a friend of mine when Alma was diagnosed. She was very kind and told me in that first awful week that there was a lot of hope for Alma. I didn’t hear much from her after that, though I saw her occasional posts on Facebook. And now she’s gone. So You’v...

ourf508life.wordpress.com

August | 2013 | Our ΔF508 Life

https://ourf508life.wordpress.com/2013/08

Our ΔF508 Life. Our family, living with CF. Monthly Archives: August 2013. August 29, 2013. Mother and Baby Are Both Healthy. When I see these announcements now for friends or family, I feel a little pang in my heart. I know that for most people, it’s true. Their baby is healthy. This is not something I’ve ever been able to rest easy in, or take for granted. I wonder often how I can help Alma grow up as someone with a chronic condition. It can be such a helpless feeling, knowing your child has this.

ourf508life.wordpress.com

From the Trenches | Our ΔF508 Life

https://ourf508life.wordpress.com/2013/10/03/from-the-trenches

Our ΔF508 Life. Our family, living with CF. 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 cold. I was resting lots, eati...

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Random thoughts about random things. Noi recomandari pentru filme si seriale. Femeia: Instructiuni de folosire. Actualizare lista filme si seriale. Cheesecake cu fructe de padure. Inca-mi salta ochii-n cap :-). Tot ce am avut vreodata nevoie sa invat, am invatat de la MAMA…. Nimic nu este imposibil. On Salteaua Saltex Memory Foam. On Salteaua Saltex Memory Foam. On Salteaua Saltex Memory Foam. Cheesecake cu fructe de padure. Cornulete fragede cu rahat “Spitty”. Tort cu fructe de padure Spitty. Cand e tri...

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Mot de passe :. J'ai oublié mon mot de passe. Salut c moi spititout ca va? Bienvenue a vous c mon sky blog alor aucune critike ok bon aller les gens. Mise à jour :. Abonne-toi à mon blog! Apres un long reflechissage (je c ca ne ce di pa). Jai remarker ke tu etai kasiment abesente de mon blog et c pour koi o jourdui je te devoile o gran jour toi mon amant damouw je compren e ca te fasse reflechir mai maintenant c bon je t mise et tkt yen aura dotre. Ou poster avec :. Posté le mardi 05 septembre 2006 18:47.

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Spit It Out | Open human rights blog for students by students.

Open human rights blog for students by students. Boko Haram and the Nigerian School-Girls: Applying a Rights Centred Approach in Change. June 17, 2014. June authorities in Abuja, the Nigerian capital, issued a statement banning further rallies around the campaign, stating ‘security fears’. A day later this statement was overturned and denied. You may also not know that on 12. Following on from this statement, the governments of the UK, the USA and France, who pledged this support should ensure recognitio...

spititoutblogspot.com

Spit It Out!

A patient perspective on developments in the treatment and management of Cystic Fibrosis. I'm a 39 year old living and working with CF and CF-related diabetes. Double F508del. FEV1 is currently 25%. My motto: "If it works, do more of it. If it doesn't work, don't do it. If you're not sure, do some experiments." Twitter: @oli rayner. Friday, 3 July 2015. Phase 2b Gene Therapy Results. There were no safety issues. Those with more severe disease (less than 70% FEV1) saw bigger effects but it is not clear wh...

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FOR Change.Connection. Growth. Leadership. Network. Spit it out ladies club. Nairobi, nairobi ,CBD, Kenya. We meet every Last THURSDAY of each month at 5.30pm to 8 .30pm.venue is announced through email and sms. JOIN TODAY ALL SINGLES AMD MARRIED LADIES. Goals and Objectives What does Spit it Out (women for women) club hope to achieve? View my complete profile. Http:/ www.facebook.com/group.php? Friday, November 16, 2007. WHY TRUE INTIMACY TAKES GUTS AND GOOD SEX NEEDS GOOD COMMUNICATION. By Dr Janet Hall.

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Spit it Out Jules

Spit it Out Jules. A place to see my process on theatre related projects. Monday, September 12, 2016. This Saturday I helped paint the floor and chairs for Metropolitan State University of Denver's production of Spring Awakening. The main stage is a giant tree stump. We added grain lines/tree rings with cut up paint brushes:. Then I painted on thinned down brown paint onto Ikea chairs and wiped off the excess:. Julia H. Deutsch. Bring on the Demon! More to come soon! Julia H. Deutsch. The event follows s...

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By Spit It Out. Includes high-quality download in MP3, FLAC and more. Paying supporters also get unlimited streaming via the free Bandcamp app. Released July 24, 2016. Recorded and mastered by Taykwuan Jackson. Feeds for this album. Contact Spit It Out. Ive been looking for a reason to live,. In a world that dont want me, this place dont want me. Give me a reason to fight and ill fight. But dont feed me your lesson in wrong and right,. Ive been through it, im still going through it. I just need something,.

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Spit It Out Loud. 23 Venezuelan in Milwaukee, WI. Psychology ψ . cinematography , dubstep, d&b, sex, weed,. Piercings, tattoos, art, mythologies, buddhism, NSFW blog,. Ask anything you want. Posted on: August 13 with. 1997) Dir. Luc Besson. Posted on: August 13 with. Posted on: August 13 with.