YesOrkambi is changing its profile pic in support of our UK friends who are still fighting for Orkambi - a fight they will never give up.
As a sign of solidarity and to raise awareness of the Cystic Fibrosis Orkambi Debate in Westminster on 19th March, will you stand side by side with the CF community and change your profile picture to the one below?
Keeping up the fight in the UK 💪🏼 We're rooting for you on Wednesday.
Our MP's are the voice for our community at the round table event on Wed, 28th Feb & #Orkambi Debate on Mon, 19th March.
Contact your MP & ask them to attend -... letter or email is best with your address to show you are their constituent.
Useful information link:
You can still sign this peition until Tuesday:
Portsmouth & Isle of Wight Branch of Cystic Fibrosis Trust (CF Trust)
Becki Short: Singing Teacher and 1940's Entertainer
Supporting Events/Fundraisers for Cystic Fibrosis Trust
[UK] - Fighters Against Cystic Fibrosis (F.A.C.F)
Cystic Fibrosis Trust
Cystic Fibrosis Trust IOM
Cystic Fibrosis Channel Islands
Cystic Fibrosis News
Wessex Adult Cystic Fibrosis Service
Surrey Cf Dolls
Our CF Journey
Chester's CF fight
Mikey's CF Journey
Alex's CF Army
CYCLING HATS ADVENTURES
Cystic Fibrosis Holiday Fund
Living and Breathing CF
Love What Matters
Men's Health UK
Cystic Fibrosis Awareness
Cystic Fibrosis Tattoos
Wesley Ashlie Welch
How have I cheated death? - Tim Wotton
Cystic Fibrosis Kids - CFK
Breathe With Me Strawfie Challenge USA
The UK are still fighting for Orkambi. If you know anyone in the UK please ask them to sign this petition. It's not right that patients STILL don't have access. Let help the push for progress. #YesOrkambi
**ALL SOCIAL MEDIA PLATFORMS**
Please share #Okambi petition on Twitter, Linked In, Google+, YouTube, Pinterest, Instagram, Tumblr.
MAKE FACEBOOK POSTS PUBLIC... TO REACH MORE PEOPLE
Don't apologise for asking. Why wouldn't a friend or family member support the #CysticFibrosis cause? petitionhttps://petition.parliament.uk/petitions/209455
Sharing for our friends in the UK who are STILL fighting for Orkambi access. You can help by sharing or tweeting.
A new mum from Sittingbourne says she might not see her son grow up, unless she receives a life-changing drug.
Always fighting the greater fight; even when the chips are down. Please keep our CF ninja Orla Tinsley in your thoughts - the world is a better place with her in it. You can do this Orla! 💪🏼
Hopefully, Orla will get that life-saving call before Christmas.
Hi all, let's help our CF friends in Wales by signing this petition...
At times it felt like we would never get there, but our CF community is strong and undeterred by obstacles. Today some of us were honoured to meet with the President to mark the contributions of so many in raising awareness and furthering the fight for a better life for people with Cystic Fibrosis. #YesOrkambi #humbled
The average person takes 16 breaths per minute. A person with Cystic Fibrosis has to fight for every single one.
#FightToBreathe is a new 60-second advertisemen...t that graphically illustrates how life for a person with cystic fibrosis is exactly that ̶ a constant fight to breathe ̶ and invites audiences to experience that fight for themselves.
Support #FightToBreathe and the CF Community who fight for every single breathe by sharing this video, ttexting "Fight CF" to 50300 to donate €4* to Cystic Fibrosis Ireland or by donating online at www.cfireland.ie. [*Text costs €4. Cystic Fibrosis Ireland will receive a minimum of €3.25. Service Provider: LIKECHARITY. Helpline: 076 6805278.]
Really interesting read...
CFI's statement on the release from Vertex last week...
Further promising news from Vertex for those with F508del and one minimal function gene alteration.
This news release covers the VX-152; VX-440 and the VX659 th...erapies presently undergoing clinical trials. These show very exciting outcomes for those with F508del and one minimal function gene alteration.
Click the link below to read the full release.
Orla Tinsley has been a tireless campaigner for people with CF - she is a force for good, a force for change. Wouldn't it be great to give back in some small way and help her get a contingency fund together for after her double lung transplant?
My own daughter is in the 'tough to treat' category, so this article made my heart sing this evening 💜 And although our pipeline deal doesn't cover drugs for this patient group, I am filled with hope and positivity. #BeatCF