Here’s the presentation slides from our parents evening which explains the new Triple Therapy drug which will cover 3 classes of CF as opposed to just the double delta class of CF which Orkambi currently targets. Benefiting 90% of the CF Community.
Attached below is a copy of the presentation given by Dr Robertson at our annual parents meeting.
Hopefully you’ve all received your invites for this years annual parents evening. It’s a great opportunity hear the latest news in the CF world and get to meet other parents. We have some yummy food and drinks organised so please make sure you let the CF Team at Treliske that you are coming so we can cater accordingly. Looking forward to seeing you all.
After a busy but successful first year of fundraising, Just Breathe Cornwall has received Charitable status. We have now successfully changed from a small local organisation to an official charity.
Thank you to everyone who has supported us with this mission, we are truly grateful and extremely excited for this next chapter to begin.
We are hoping this means we will be able to apply for grants for bigger companies to enable us to support more families in Cornwall.
If you work for a large business or know a large business that is looking for a charity to support please put them in contact with us.
Morgan is 15 and has Cystic Fibrosis.
In October he took part in the Junior Great South run. His second ever competitive race.
Morgan completed the race in 9 minutes & 33 seconds, which is a fantastic achievement considering his lung function had dropped to 40% last year. Morgan has been concentrating on his fitness and has only been running since July this year. He’d always found running a real struggle because of his reduced lung function. However, since joining the gym he has had the confidence to push himself further. His first run was a 1 mile run in Sticker where he came 5th, which inspired him to carry on. This next race was 1/2 a mile further and he did it in an even faster time. He is now training for the 10 mile Great South Run next year.
Morgan knows what it’s like to struggle not only with running but with anxiety too, so when he saw a young girl, on a previous race, completely freeze and refuse to go any further, he could empathise and felt the need to help her in some way.
Morgan said “she was so close to the finish line, I couldn’t bear to see her not complete it”
Morgan stepped in and took his little dog, Lottie, over to her, in the hope this would distract her from her fears and enable her to complete the race.
Thankfully it worked and they crossed the finish line with smiles all round.
A few days before Aiden turned 7 months old, he learned to walk! Yep I here you, 6 month old babies can’t walk! Well this one could!
As we know, when you have autism, you do not follow the rule book, nothing is ever straight forward, except in this case it was quite literally that, straight forward (but not as we know it!)
Aiden was, in a physical sense, extremely rigid. He didn’t bend easily. He hated lying or sitting down and was only happy when he was up right. Everyone would say, ‘he’ll be much happier when he can walk, he won’t be so frustrated’. I longed for the day.
We spent hours on end bouncing him up and down in an upright position, anything to stop his constant moan. But, because of this, he never learned to crawl or bum shuffle or in fact, he couldn’t even work out how to get from a lying to a sitting position.
The picture Above was taken the day Aiden walked. Gorgeous I know – but looks can be deceiving!
Aiden was absolutely no help to himself whatsoever. He could walk ‘straight forward’ and that was it!
Most babies/toddlers crumple to the floor when they fall, not Aiden, he didn’t bend! So he would fall flat on his face, he didn’t even put his arms out to save himself. Once on the floor that was it, he didn’t know how to get up, not even to a sitting position, so he would lie face planted to the floor and screem! Yey, the walking stage was great fun!
He was probably about 18 months before he’d worked out how to stand up and confidently change direction while standing – that was a long year!
Once Aiden had established walking, he decided he didn’t much like it anymore and gave up! Not always, but just when he felt like it – which just so happened to be every time I needed him to!
He has pretty much refused ever since! Walking was on his terms only and just the thought of having to walk somewhere would send him into complete meltdown!
Aiden has hyper mobile joints and his body’s way of dealing with this is to stiffen. He was like a little robot. He couldn’t tell me until more recently that he was in pain, so I didn’t know. On top of this he also has Cystic Fibrosis.
But let me tell you, Aiden surprises me everyday! The child who refused to walk anywhere, just took part in a 10 mile race!
He just completed The Great South Run. It took him 2 hours and 20 minutes, he didn’t run it all, but he did it!
He was in control, it was his choice when to jog or when to walk and he slept for a week after, and is still hobbling, but he did it!
Will him come to the woods for a walk next time I ask? Unlikely! But, if you’d have asked me when he was 5, 10, 15 years old, do you think Aiden will ever take part in a 10 mile race? I would have said ‘NEVER!’
Never underestimate the strength within!
Aiden, ran with his Dad and friend Ian and between them raised a whooping £500 for Just Breathe Cornwall.
Just Breathe Cornwall has reached its annual fundraising target and made its first award to a family in Redruth.
The local Cornish charity was set up 18 months ago to help families in the county living with Cystic Fibrosis (CF). It set itself an annual fundraising target of £5,000 before inviting applications for awards.
Sufferer, six year-old Sophie Smith was gifted an Eflow nebuliser to help her breathe easier. Nebulisers are part of a daily routine for those with the life-limiting disease, delivering medicine into the lungs.
The NHS provides nebulisers to CF patients but the models take 20 minutes to deliver each dose of medicine, are really noisy and they need to be plugged in.
The charity’s founder, Vicky Coxhead, from Polgooth says: “Anyone who has ever tried to keep a six-year old still for 20 minutes will know the challenge. Now imagine having to do that twice a day every day – it’s a nightmare. Every time they loose interest and don’t fully inhale they are missing a vital dose of medicine. The Eflow is amazing because it takes so little time, is quiet and is portable – the trouble is it is so expensive.”
The Eflow costs £550.00 with an annual running cost of at least £120.00 a year – that puts it out of reach for many CF families.
The charity has been overwhelmed by the kindness and generosity of local businesses and supporters with fundraising having taken many different forms. One teenager lopped off her long blond locks to raise £500; three runners completed the Manchester Half Marathon raising £1,000; one local author kindly donated the proceeds from her book launch and the charity has benefited from some very flexible friends who gifted the proceeds of two charity yoga days.
There are around 70 families in Kernow with CF. The charity’s ambition is to be able to help them all with equipment and activities to support their physiotherapy. Research shows, the best way for those with CF to keep their lungs healthy and avoid long hospital stays, is to do two hours of intensive daily exercise.
Vicky continues: “Sporting activities don’t come cheap and that’s what we want to help CF families access. Whilst we’re thrilled with the progress we’ve made since our launch, we’re looking to ramp up fundraising support to enable us to help even more families.”
Anyone looking to support can reach the charity at http://www.justbreathecornwall.com on Facebook at Just Breathe Cornwall or Twitter Just_BreatheCF
This event has been postponed! We are teaming up with Treliske for an opening evening around February time.
We are inviting all parents and family members of the Cystic Fibrosis community, in Cornwall, to join us for an evening to have a chat with one another and share ideas, stories and anything you damn well like. We hope the Parents Hub will become a regular occurrence that will offer a place to chat in a relaxed environment with other CF families.
Light refreshments will be provided to those attending, courtesy of Just Breathe Cornwall (JBC).
Date: Wednesday 17th October 2018
Time: 7:30 – 9pm
Venue: The London Inn, Summercourt.
Please be mindful that unfortunately due to one our committee members having Cystic Fibrosis, we recommend children and adults with CF do not attend the evening.
Morgan is well on his way to Manchester City performance training camp this summer. He tells us it’s all booked for the 19 August and he is busy working out to be at fit as he possibly can be in preparation. He has sold an enormous amount of dog treats, raising over £100 for Just Breathe Cornwall and has had some amazing donations from kind people who have read his story, giving him the full amount to fund his trip. Anything he now raises he says will go towards his on going personal training, equipment and travel. Morgan’s story has reached people far and wide, so far, the furthest we have heard it’s reached is as far as China! This is brilliant, not only for Morgan but it has also helped raise great awareness for Cystic Fibrosis and has led to us receiving extremely kind donations to Just Breathe, and all thanks to Morgan and his innovate enterprise. Continue the hard work Morgan and follow your dream! Thank you to everyone who has and is still supporting Morgan – it’s an exciting journey. For those that haven’t found Morgan on social media, you can follow his story on Facebook ‘Pasties for Pooches’ Page or on Twitter @MorganCoxhead