FOP Friends

⌛Only a few places left now to register for the London Landmarks Half Marathon! 🎡Take in all the famous sites of our stunning capital city whilst raising money and awareness for FOP Friends! ⌛Don't delay! Secure your place now... https://lnkd.in/eiv4CRvA

Last week, we shared details of the Adult Rare Bone Disease Network, but what does it do? This is a Rare Disease Collaborative Network that sets out to improve outcomes for adults living with rare bone diseases. Slide along to find out the aims and check out the website for more information: https://shorturl.at/7aFcV #AdultRareBoneNetwork Image Description Image One: Dark and light blue background overlayed with text reading “What does the Adult Rare Bone Disease Network do?” in white. A graphic of speech bubbles is shown with a question mark in one of the bubbles. The NHS Rare Disease Collaborative Network logo is shown in the bottom right corner. Image Two: Dark and light blue background overlayed with text reading “Raises awareness about rare bone diseases” and “Improves coordination of care” in white. The NHS Rare Disease Collaborative Network logo is shown in the bottom right corner. Image Three: Dark and light blue background overlayed with text reading “Establishes support for rare bone diseases” and “Shares expertise and best practice” in white. The NHS Rare Disease Collaborative Network logo is shown in the bottom right corner.

🍀Good luck to #TeamFOPFriends this morning as they take on the iconic #GreatNorthRun 2024. We have a fabulous crew of ten runners today who have worked hard on their training and their fundraising! Thank you to Alexa, Ashlie, Callum, David, David, Elizabeth, Lisa, Sally, Sarah and Steven! 🧡A special mention for David O'Leary who is running the run for the fourth time for FOP Friends! Amazing! 🥇Enjoy the race - it's one of the best you'll ever do! #FOPFriends #CureFOP #GNR #Bioscript @bioscript

You may have heard of the Adult Rare Bone Disease Network, but what is it? 🤔 Slide along for a short description and visit the following link to find out more, see who’s involved, and learn how the network can benefit you: https://shorturl.at/7aFcV #AdultRareBoneNetwork Image Description Image One: Dark and light blue background overlayed with text reading “What is the Adult Rare Bone Disease Network?” in white. A graphic of speech bubbles is shown with a question mark in one of the bubbles. The NHS Rare Disease Collaborative Network logo is shown in the bottom right corner. Image Two: Dark and light blue background overlayed with text reading “This is a rare disease collaborative network set up specifically to improve services for adults living with rare bone diseases in the UK” in white. A graphic of a bearded waving, smiling man is shown. The NHS Rare Disease Collaborative Network logo is shown in the bottom right corner.

🎒And just like that, the summer's over and it's Back-to-School for many of you. Some of our followers may also be starting college, university or an apprenticeship. 🏫Going to school can be a scary time for anyone, even more so for someone living with a complex health condition such as FOP or POH. We have collected together a bunch of resources to help you. Visit: https://lnkd.in/eXBAN8wG 📸We would love to see your back-to-school photos (and your front doors 😉) so please leave a photo comment below! 📈We wish you every success as you start your next chapter...

A big shout out for Izzy this morning as she takes part in The Big Half in London today. Thank you to all her wonderful friends and family who have sponsored her too! We're cheering for you! #FOPFriends #CureFOP #StrongerTogether #bighalf

🌞As the summer sun begins to set, we want to express our gratitude to each and every one of our supporters. Your continued commitment to our cause has been instrumental in driving progress towards finding a cure for FOP and providing essential support to those living with FOP. 🧡We recognise that these are challenging times, and your generosity is all the more appreciated. Your fundraisers, sponsored challenges, and donations have made a real difference. 💛Without your support, we would not be able to continue our vital work. Your contributions have enabled us to continue with our efforts to raise awareness, provide resources, and foster a supportive community for people living with FOP in the UK and beyond. 🙌Thank you for your ongoing belief in both us and our mission, and for your dedication to making a positive impact on the lives of those affected by this rare and challenging condition.

💛Some lovely, sunshiney news to end the week on!💛 🍋Earlier this month, Aurora (8) and Benjamin (6) held a lemonade stall earlier this month in sunny Scotland! They sold homemade lemonade and cupcakes!🧁 Thanks to their customers, friends and neighbours, they raised a tasty £2360 for FOP Friends! 😋Delicious! 🌞Have a great weekend everyone!🌞 #StrongerTogether

🏃A big shout out to #TeamFOPFriends who took part in a Tough Mudder back in July to raise money and awareness for FOP Friends. 🌳The fifteen-strong team took on 20+ obstacles over 10k through the stunning Heaton Park in Manchester. 💪They scaled walls, swam through below-freezing water, crawled under barbed wire and waded through mud. It was a true team effort, as the group split into mini-teams. 🧡The team included Oliver's cousin Eddie, his brother Leo, and Leo's friend Lewis - all three boys are just 14 years old! 🎉Well done to the whole team and to everyone who sponsored them. They raised an impressive £3815! Job done guys! #TeamFOPFriends #CureFOP #FOPFriends #toughmudder #mudder #teameffort #teamwork #strongertogether

Happy International Dog Day! Today we celebrate our furry friends! We know so many of our followers have fur-babies - so today's your day to show them off! Leave a photo of you and your 'best friend' in the comments below! #furryfriends #furbabies #internationaldogday #fopfriends #curefop