FOP Friends
@fopfriends.bsky.social
We are dedicated to supporting those living with the rare genetic condition FOP and raising awareness and much needed funds to support the research into a treatment and a cure. We also support those living with the rare condition POH.
📣Please join us in giving a big SHOUT OUT to #TeamFOPFriends for their incredible effort at the Great North Run yesterday!🎉
🌟You all are absolute superstars.🌟
🙌A huge thank you too, to their incredibly generous families and friends who have sponsored them.
🌟You all are absolute superstars.🌟
🙌A huge thank you too, to their incredibly generous families and friends who have sponsored them.
September 8, 2025 at 1:06 PM
📣Please join us in giving a big SHOUT OUT to #TeamFOPFriends for their incredible effort at the Great North Run yesterday!🎉
🌟You all are absolute superstars.🌟
🙌A huge thank you too, to their incredibly generous families and friends who have sponsored them.
🌟You all are absolute superstars.🌟
🙌A huge thank you too, to their incredibly generous families and friends who have sponsored them.
🏃Please join us in wishing Hope, Jane, Mick, Rebecca, Richard and Simon all the best as they take on the #GreatNorthRun today for FOP Friends.
😍A big shout out too, to all their amazing families and friends who have so generously sponsored them!
🥇Go #TeamFOPFriends! 🙌
😍A big shout out too, to all their amazing families and friends who have so generously sponsored them!
🥇Go #TeamFOPFriends! 🙌
September 7, 2025 at 8:00 AM
🏃Please join us in wishing Hope, Jane, Mick, Rebecca, Richard and Simon all the best as they take on the #GreatNorthRun today for FOP Friends.
😍A big shout out too, to all their amazing families and friends who have so generously sponsored them!
🥇Go #TeamFOPFriends! 🙌
😍A big shout out too, to all their amazing families and friends who have so generously sponsored them!
🥇Go #TeamFOPFriends! 🙌
🎉Our summer 🌻newsletter is out!
🦋We're delighted to be able to bring you news from the past couple of months.
👉Check it out here: https://loom.ly/X9l7VNQ
🦋We're delighted to be able to bring you news from the past couple of months.
👉Check it out here: https://loom.ly/X9l7VNQ
August 8, 2025 at 6:02 PM
🎉Our summer 🌻newsletter is out!
🦋We're delighted to be able to bring you news from the past couple of months.
👉Check it out here: https://loom.ly/X9l7VNQ
🦋We're delighted to be able to bring you news from the past couple of months.
👉Check it out here: https://loom.ly/X9l7VNQ
🧡In honour of #InternationalFriendshipDay...🌍
📸share your photos of you and your besties! 👇
😍Maybe it's people who you've met on your FOP journey....maybe it's friends from across the miles.... maybe it's friends who just make your day that little bit brighter...
🎉Let's celebrate friends!🎉
📸share your photos of you and your besties! 👇
😍Maybe it's people who you've met on your FOP journey....maybe it's friends from across the miles.... maybe it's friends who just make your day that little bit brighter...
🎉Let's celebrate friends!🎉
July 30, 2025 at 1:06 PM
🧡In honour of #InternationalFriendshipDay...🌍
📸share your photos of you and your besties! 👇
😍Maybe it's people who you've met on your FOP journey....maybe it's friends from across the miles.... maybe it's friends who just make your day that little bit brighter...
🎉Let's celebrate friends!🎉
📸share your photos of you and your besties! 👇
😍Maybe it's people who you've met on your FOP journey....maybe it's friends from across the miles.... maybe it's friends who just make your day that little bit brighter...
🎉Let's celebrate friends!🎉
Today we celebrate 🧡International Friendship Day! 🌍
🦓Living with a rare condition such as FOP or POH can be isolating.
🙏We are thankful for the friends we have made around the world who stand by us and with us each and every day.
😍Through collaboration we are making a real difference.
🦓Living with a rare condition such as FOP or POH can be isolating.
🙏We are thankful for the friends we have made around the world who stand by us and with us each and every day.
😍Through collaboration we are making a real difference.
July 30, 2025 at 11:01 AM
Today we celebrate 🧡International Friendship Day! 🌍
🦓Living with a rare condition such as FOP or POH can be isolating.
🙏We are thankful for the friends we have made around the world who stand by us and with us each and every day.
😍Through collaboration we are making a real difference.
🦓Living with a rare condition such as FOP or POH can be isolating.
🙏We are thankful for the friends we have made around the world who stand by us and with us each and every day.
😍Through collaboration we are making a real difference.
⛰️A huge CONGRATULATIONS to Joe and his friends who have successfully reached the summit of Snowdon!
🎯Joe has smashed his fundraising target, and some of his friends have also collected monies and donated them to Joe's total.
🧡Thank you, from everyone affected by FOP! You make a great team!
🎯Joe has smashed his fundraising target, and some of his friends have also collected monies and donated them to Joe's total.
🧡Thank you, from everyone affected by FOP! You make a great team!
July 26, 2025 at 6:30 PM
⛰️A huge CONGRATULATIONS to Joe and his friends who have successfully reached the summit of Snowdon!
🎯Joe has smashed his fundraising target, and some of his friends have also collected monies and donated them to Joe's total.
🧡Thank you, from everyone affected by FOP! You make a great team!
🎯Joe has smashed his fundraising target, and some of his friends have also collected monies and donated them to Joe's total.
🧡Thank you, from everyone affected by FOP! You make a great team!
🎡We have place available for the London Landmarks Half Marathon 2026!
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
July 21, 2025 at 12:08 PM
🎡We have place available for the London Landmarks Half Marathon 2026!
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
🎡We have place available for the London Landmarks Half Marathon 2026!
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
July 17, 2025 at 8:01 AM
🎡We have place available for the London Landmarks Half Marathon 2026!
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
Thursday 24th July 2025 @ 8pm
💊In our second webinar, we aim to shed light on the crucial steps involved in making a new FOP medicine available to patients on the NHS in the UK. It will explain the distinct roles of key regulatory and funding bodies.
✅Register now: https://loom.ly/yB-rsZ8
💊In our second webinar, we aim to shed light on the crucial steps involved in making a new FOP medicine available to patients on the NHS in the UK. It will explain the distinct roles of key regulatory and funding bodies.
✅Register now: https://loom.ly/yB-rsZ8
July 16, 2025 at 7:01 AM
Thursday 24th July 2025 @ 8pm
💊In our second webinar, we aim to shed light on the crucial steps involved in making a new FOP medicine available to patients on the NHS in the UK. It will explain the distinct roles of key regulatory and funding bodies.
✅Register now: https://loom.ly/yB-rsZ8
💊In our second webinar, we aim to shed light on the crucial steps involved in making a new FOP medicine available to patients on the NHS in the UK. It will explain the distinct roles of key regulatory and funding bodies.
✅Register now: https://loom.ly/yB-rsZ8
🎉We woke up to a lovely surprise this morning - a generous donation!
😎However, the donor has chosen to remain anonymous!
🦋This is totally ok and we always respect the wishes of our donor.
🌃If you are reading this and you are the kind midnight donor, THANK YOU!
🌞Have a great Tuesday everyone!
😎However, the donor has chosen to remain anonymous!
🦋This is totally ok and we always respect the wishes of our donor.
🌃If you are reading this and you are the kind midnight donor, THANK YOU!
🌞Have a great Tuesday everyone!
July 15, 2025 at 11:01 AM
🎉We woke up to a lovely surprise this morning - a generous donation!
😎However, the donor has chosen to remain anonymous!
🦋This is totally ok and we always respect the wishes of our donor.
🌃If you are reading this and you are the kind midnight donor, THANK YOU!
🌞Have a great Tuesday everyone!
😎However, the donor has chosen to remain anonymous!
🦋This is totally ok and we always respect the wishes of our donor.
🌃If you are reading this and you are the kind midnight donor, THANK YOU!
🌞Have a great Tuesday everyone!
🌞Harry's dad Phil kept cool by taking on the 7.5 mile open water Chillswim Ullswater Swim Challenge.🏊♂️
🥉Phil was spurred on by his son's recent diagnosis of FOP.
💙Phil did Harry proud and completed the challenge in 3 hours and 18 mins.
😍A huge thankyou to Phil for taking the plunge
🥉Phil was spurred on by his son's recent diagnosis of FOP.
💙Phil did Harry proud and completed the challenge in 3 hours and 18 mins.
😍A huge thankyou to Phil for taking the plunge
July 14, 2025 at 11:30 AM
🌞Harry's dad Phil kept cool by taking on the 7.5 mile open water Chillswim Ullswater Swim Challenge.🏊♂️
🥉Phil was spurred on by his son's recent diagnosis of FOP.
💙Phil did Harry proud and completed the challenge in 3 hours and 18 mins.
😍A huge thankyou to Phil for taking the plunge
🥉Phil was spurred on by his son's recent diagnosis of FOP.
💙Phil did Harry proud and completed the challenge in 3 hours and 18 mins.
😍A huge thankyou to Phil for taking the plunge