Never stop forgetting those dear CF friends and acquaintances that have sadly passed away from this relentless condition. Recently over the course of three days I learned of the deaths of four CFers. One was my mid-50’s mentor and fellow author Richie Keane from New York, who I had exchanged a lot with on social media.
– It’s funny how life works. When I was sitting in London’s Embankment Gardens thinking about the sad loss of Richie Keane, Neil Tennant of the Pet Shop Boys walked past! I greeted him, we shook hands. I told him he was a star and he said “Thank you. So are you!”
Never stop improving the awareness and understanding of the general public about CF: the daily medical regime required to defy an early demise and the appreciation that despite this incessant condition, CFers can and do lead full lives and make a difference.
– CFer Bianca Nicholas from the group Electro Velvet sung her heart out for England in the Eurovision Song Contest, Nick Talbot has bravely taken on Mount Everest twice and Richard Eagles is about to go to Ecuador with other transplant recipients to climb Cotopaxi, one of the highest volcanos in the world, as part of an amazing adventure called ‘Climbing for my Donor’.
Never stop developing new medicines to make a step-change in our health and survival chances. Vertex are bringing to market the new combination drug ‘Orkambi’ (I want the job of coming up with drug names – I can do better than ‘Orkambi’ – sounds like’s Bambi’s cousin!) which will benefit 50% of CFers with the double Delta 508 mutation (if it’s funded – hint hint) and the UK Consortium are making good progress with their on-going gene therapy trials. Pharmaceuticals must never stop until CF stands for Cure Found!
Never stop connecting and engaging with each other on social media. Due to the risks of cross-infection, we CFers have been advised not to see each other face-to-face, which can make it a very lonely illness to combat. CF Week in the UK 6-13 June has the ‘Power of Us’ theme which encourages the CF community to share their stories.
Never stop my utter commitment to the daily medical regime, regular exercise, sport & gym sessions and topping up my cup of positivity.
Never stop sharing experiences, life lessons and knowledge on surviving CF, as I have done with this blog and also with my memoir ‘How have I cheated death?’ and recent US podcast explaining the rollercoaster ride which Katie and I endured to become proud parents to our son Felix.
– I’m now an award winning author – my book won the ‘Best Achievement’ award at the UK’s People’s Book Prize in late May, televised by Sky News. (Go to 20:00 to see my winning speech)
– My podcast with CF legend Jerry Cahill about my survival and being a dad with CF.
And finally, never stop celebrating and maximising each and every new day that we’re given with our friends and family.
I will keep you posted on my life-affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.
Yours cup half full.
Tim Wotton (CF author)
Find out more about CF Week in the UK.
Find out more about Richard Eagles’ ‘Climbing for my Donor’ adventure and if you can help with his funding; a huge thank you!
In other news
My CF memoir is now available as an Audio Book with a voiceover by JP Nicholas. Check it out here.
* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.