@cftrust I’ve seen a charity collecting medical donations to ship to Ukraine. Is this something you would do for CF patients there?
Aware of UK patients talking about sending individual parcels. Unsure legality/practicality there. Is an organised consignment possible?
@CFAware
NHS patients with cystic fibrosis will be among the first in Europe to benefit from the new triple therapy for the condition following a landmark deal, NHS Chief Executive Simon Stevens has announced today.
Simon Stevens closes the session by telling the Committee that this morning @NHSEngland has signed a commercial agreement with @VertexPharma to make available its triple therapy for cystic fibrosis patients--on the very day it receives its European licence
42 miles and 16 and a half hours later were done!!! Wow.... these girls are incredible and I couldn’t of done any of it without them!! As hard as a marathon? ABSOLUTELY! #tooinspiredtobetired#greatstrides65#CFtrust
Life with CF is full of disappointments-gutted to have pulled out of my 30 mile training walk-the heat was too much&my salt levels were too low-Now focusing on lessons learnt for the BIG day on Saturday!! #GreatStrides65#CFisallaboutSALT#cftrust#cysticfibrosis#priorplanning
Final cake count- £1,071!! Who would’ve thought you could raise that much from cake!! Brings us ever closer to our £10,000 target! One week to go until #GreatStrides65 and still time to sponsor us! https://t.co/nKgB9u5wC8
What a fantastic morning at the Farleigh Cake Sale in support of Mrs Stewart’s 65km walk, raising money for The Cystic Fibrosis Trust. Amazing generosity from so many of the ‘Farleigh Family’-we raised a wonderful £1,002! What a way to start half term! #cftrust#farleighfamily
On 9th June I, along with 7 friends, will be taking part in the 'Great Strides 65' event, walking, 65km (40 miles) in a day to raise funds for The Cystic Fibrosis Trust. Follow our story and find out why we walk here... https://t.co/nKgB9u5wC8 #greatstrides2018
Was very excited to meet @h_richardson8 & @katewalsh11 at the Palace yesterday&see them receive their honours-An inspirational pair&LOVELY!!