Welcome to CF Week! Earlier this year, we asked you what you would like us to talk about during this year’s CF Week. The issues you suggested were around balancing the burden of care with everyday life. Even though the world has changed a bit since then, we still asked you to share your stories with us to celebrate the resilience of the cystic fibrosis (CF) community balancing the every day and during the coronavirus (COVID-19) epidemic.
Every day we will be sharing those stories and hosting various live events all week - so stay tuned for everything about #balancingCF!
Don't forget to join the Big Yellow Party on Wear Yellow Day (Friday 19 June), where we will be raising funds for our Emergency Appeal.
Wear Yellow Day
Monday 15 June
We kicked off the week with Derek's story, who shared with us how he learnt to find balance later in life after he was diagnosed at 30 years old.
Derek also shared his experience during our live Zoom panel discussion, alongside CF parents Roy and Lu, CF Psychologist Helen and Jacqueline from our Information and Support team. Our panel discussed what balance means to them, their perspectives of how CF affects their day-to-day lives, the limitations they've faced in lockdown, and ways they cope with managing cystic fibrosis.
We shared quotes about how people with CF find balance in their lives, including one from a parent to someone with CF, and we asked the community to share their experiences of finding balance as a family. We also shared Catherine's macaroni cheese recipe ahead of tomorrow's Instagram Live cook-along, so make sure you check your cupboards!
Tuesday 16 June
Today we met Millie, who has CF-related diabetes, and published our 'Research in focus' report on how our funding has led to a greater understanding of the underlying cause of this common CF complication. We also shared Andrew's story, who told us about his life with CF and gave his tips for finding balance in treatment, exercise and relationships.
Our very own star baker Jairzeno loaned us his lemon and poppy seed cake recipe, to inspire people baking cakes for their Big Yellow Party. Demi also showed us how she does her nebulisers to the Harry Potter theme song!
A YouGov poll commissioned for CF Week revealed four in five of the general public are unaware that people with CF cannot meet one another due to the risk of passing on potentially deadly bugs, while the prevalence of the CF gene and issues such as the burden of care are also little understood.
We then joined Catherine's cook-along on Instagram, where she taught us how to make mac'n'cheese!
Wednesday 17 June
Wednesday was all about how people have been balancing CF with life in lockdown. Sophie told us about how shielding has impacted her son Sonny, who has CF, and shared how she has been managing this. We also heard from a few others in the community about the tolls of COVID-19, and asked you to share your tips.
Sean's shared his top five lockdown 'life-hacks', with number four being showering... but bear with him as he does have a good explanation!
Tonight is our third and final Big Yellow Quiz - Shaun Wallace from The Chase has had a sneak peek at the questions and is challenging only the best of the best to give it a go, so make sure you're there tonight at 7.20pm on Facebook Live.
Thursday 18 June
Team CF Superheroes returned today, with Team CF Superheroes: My Challenge My Way - our newest fundraising event, where you get to choose a challenge that's right for you, at your own pace in a safe place, while helping us fight for a life unlimited. We heard from people with CF about how they balance exercise and fitness, with Personal Trainer Melissa taking over our Instagram stories and sharing her best fitness tips.
Sarah uses music as one of her escapes and shared one of her latest songs that she wrote about having cystic fibrosis. Nubi talked us through her morning routine and told us how she finds balancing CF can sometimes mean slowing down and taking away the 'CF elements' of her life for a bit of relief. We also heard from six-year-old Aqsa, who has found a new love for making fitness videos, and our 65 Roses Patron Rob Law MBE, who unveiled his new autobiography as well as the lessons he has learned from a life balancing CF, the ever-changing business world and raising a family.
Our ambassador Richard Madeley got us hyped for Wear Yellow Day tomorrow... only one more day to go until our Big Yellow Party! Don't forget to get your cocktail or mocktail ingredients, and to download all your virtual party resources, and join us on Zoom at 6-7pm tomorrow night!
Friday 19 June
Over the past few days we have heard the ups and downs of balancing CF and, in each, a strength and determination has shone through.Today is all about celebrating that strength, as 23-year old Demi does in her blog, sharing with us how she went from growing up hiding her invisible illness to embracing it whole-heartedly. We also shared Ed's story, on how he finds motivation in the CF community
It's Wear Yellow Day today! Thank you to everyone who has shared a #CFYelfie so far. If you haven't yet, just don your best yellow outfit, take a selfie, post it social media with the hashtag #CFyelfie, and text YELLOW5 to give £5, YELLOW10 to give £10 or YELLOW20 to give £20 to 70500 to support our emergency appeal.
It's also the day of the long-awaited Big Yellow Party! Join us on Zoom at 6-7pm today, where our fantastic host Jordy Deelight will be getting us in the party spirit. Expect music, dancing, fun, surprises and, of course, plenty of yellow. If you're throwing your own party, don't forget to take a picture and tag us on social media. We can't wait to see you all!
Saturday 20 June
This CF Week was about celebrating the strength and resilience of our community, especially during these challenges times. Becky Kilgariff, our Head of Information, Support and Programmes, explains some of the ways we support people with CF to achieve balance in their lives, and how we’ve adapted this support in response to the coronavirus (COVID-19) pandemic.
We also promoted our Summer Raffle, giving you the chance to win big while supporting people with cystic fibrosis. Tickets cost just £1 each; you just need to return your tickets by 21 August 2020 to be in with a chance of winning.
Sunday 21 June
Thank you so much for taking part in a fantastic week! With everything from videos and blogs to life hacks and cooking, it’s been a fascinating week of collaboration and celebration.
We’d particularly like to say thank you to our fantastic Zoom panel for sharing their experiences of balancing life with CF, to Catherine for hosting a live cook-along, to Oli Dillon for hosting our three Big Yellow Quizzes, to Jordy Deelight for hosting our Big Yellow Party, and to Shannon Harte for her A-Z photo challenge.