𝕱𝖆𝖇𝖑𝖊𝖉 𝕱𝖊𝖑𝖙𝖘

|| MOVED 🦋 || go donate

[𝕱𝖆𝖇𝖑𝖊𝖉 𝕱𝖊𝖑𝖙𝖘 @FabledFelts]

— 🦋 —
🔮 https://t.co/Taz2LzokZe🔮

#Fibrodysplasia #FOP #NeedleFelt

[𝕱𝖆𝖇𝖑𝖊𝖉 𝕱𝖊𝖑𝖙𝖘 @FabledFelts]

#MedicalTwitter #Disabilities #Charity #USA #science

[IFOPA @ifopa]

US Community: Your Voice Is Needed Urgently 💙
A proposed federal rule could limit international research collaboration, replace peer review with political approval, and restrict FOP research funding.
Comment period open through July 13.
Learn more & take action: https://t.co/Gehzydmgun #FOPResearch #RareDisease

[𝕱𝖆𝖇𝖑𝖊𝖉 𝕱𝖊𝖑𝖙𝖘 @FabledFelts]

#medicine #disability #Health #disease #MedicalTwitter

[IFOPA @ifopa]

Palovarotene (Sohonos) Now Available for Sale in Japan 🎉

We are pleased to share that palovarotene capsules (Sohonos) are now available for sale in 🇯🇵 Japan as of July 7, following approval earlier this year for the treatment of FOP. A Japanese health ministry panel recommended approval in January 2026, following clinical trials that showed no specific dose adjustments are needed for Japanese patients.

👉 What this means: Palovarotene is a selective retinoic acid receptor gamma (RARγ) agonist designed to help reduce abnormal bone formation in FOP. It was previously approved in 🇨🇦 Canada, 🇺🇸 the United States, 🇦🇺 Australia, and 🇷🇺 Russia (and provisionally approved in the 🇦🇪 United Arab Emirates), and now families in Japan have access to this treatment option.

✨ This is an important milestone for the FOP community worldwide, and we're celebrating this progress with our friends and families in Japan! 🙌

[RNA Therapeutics Institute @RTI_UMassChan]

Hot off the press from the RTI: Precision RNAi for Fibrodysplasia Ossificans Progressiva: a combinatorial, unimolecular, allele selective approach

https://t.co/53gEyJPbEC #RNA #RNATherapeutics @UMassChan

[𝕱𝖆𝖇𝖑𝖊𝖉 𝕱𝖊𝖑𝖙𝖘 @FabledFelts]

@Shpigford Noice!

[𝕱𝖆𝖇𝖑𝖊𝖉 𝕱𝖊𝖑𝖙𝖘 @FabledFelts]

False information.

Their photo is A.I slop. FOP doesn't look as severe as that.

▫️Micro injuries aren't a trigger
▫️Flares are unpredictable & spontaneous
▫️Years can pass without ossification
▫️Cures have worked on mice models
▫️Human trials for new drugs are ongoing & extensive

@ifopa

[Mykhailo Rohoza @MykhailoRohoza]

There is a disease that turns people into living statues. It is FOP, or fibrodysplasia ossificans progressiva — an extremely rare disorder affecting about 1 in 2 million people.

With this mutation, after almost any trauma, bruise, or injection, the body starts building bone where muscle should be.

The most famous patient, Harry Eastlack, broke his leg at the age of 10, after which the muscles around the fracture began to harden into bone.

Every micro-injury and every surgical attempt to remove the growths only triggered an avalanche of new bone formation. By the age of 30, Harry could move only his eyes, lips, and the fingers of one hand — a second skeleton had sealed him from the inside. He died at 39, when his ribs fused into a solid cage and left him unable to breathe.

Harry donated his body to a medical museum in Philadelphia to help science. There is still no cure for FOP, and because the disease is so uniquely rare, research moves very slowly. For patients, even one accidental bruise can mean the risk of losing mobility forever.

[𝕱𝖆𝖇𝖑𝖊𝖉 𝕱𝖊𝖑𝖙𝖘 @FabledFelts]

False information.

That photo is A.I slop. FOP doesn't look as severe as that.

▫️Micro injuries aren't a trigger
▫️Flares are unpredictable & spontaneous
▫️Years can pass without ossification
▫️Cures have worked on mice models
▫️Human trials for new drugs are ongoing & extensive

@ifopa

[医療Next のぼたけ @nobo4119]

関係者の皆様、おめでとうございます🎉㊗️！！

ソホノス®は、進行性骨化性線維異形成症（Fibrodysplasia ossificans progressiva：FOP）の患者さんの新たな異所性骨化の形成を抑制する。

FOPは進行性運動機能低下と平均余命短縮を引き起こす。

https://t.co/I2xjR0BIcF

[Josh the Editor @JoshEdits]

Fuck Sony!

[yolanda schultes @yolandaschultes]

Unglaubliche Neuigkeiten! Ägypten hat Kamel- und Pferderitte rund um die Pyramiden von Gizeh verboten und setzt nun offiziell auf Elektrobusse und -kutschen, um die Tiere vor Überanstrengung und harten Bedingungen zu schützen. 🇪🇬🐫

[Larry Engineer 🍡 @larry0x]

News I saw today about the EU 🇪🇺:

- Chat control passed
- EU mandates new cars to install face scanning camera
- EU to require passport verification for accessing internet

Fantastic

[DBL MP / Double @dbl_mp1]

Oh that is BAD

[𝕱𝖆𝖇𝖑𝖊𝖉 𝕱𝖊𝖑𝖙𝖘 @FabledFelts]

@IntroSpecktive True

[IFOPA @ifopa]

Research Fireside Chat: Dr. David Goldhamer 🔬💙
Learn how his ACT for FOP grant is exploring whether stem cells are malfunctioning or receiving wrong signals during flare-ups, driving bone formation in FOP.

📅 July 28 | 12 PM EDT / 18:00 CEST

Register & submit questions: https://t.co/CCVeC2hnWI #FOPResearch #ACTFORFOP

[Celestial Knight @Emanuel66201297]

It's not enough to cancel your PS plus subscriptions, if you want to send a strong message to Sony, let the ps6 flop by not purchasing one

[Merissa Hansen @merissahansen17]

Humans shouldn’t have to live like this.

[𝕱𝖆𝖇𝖑𝖊𝖉 𝕱𝖊𝖑𝖙𝖘 @FabledFelts]

@albertoortegana @THEMEDFACT23 Accurate! That x ray isn't FOP. FOP doesn't present as buckshot.

[𝕱𝖆𝖇𝖑𝖊𝖉 𝕱𝖊𝖑𝖙𝖘 @FabledFelts]

@Chiragrx07 @ajlkfad2333 Important! — we don't call it stoneman syndrome!

▫️FOP isn't a syndrome
▫️made up by the media for body horror
▫️offensive, dehumanising
▫️not endorsed or used by us or medical professionals
▫️Misinformation, breeding rumours, i.e contagious

[Interesting things @awkwardgoogle]

The guy who created Fortnite (Tim Sweeney) has been quietly buying up U.S. forests to save them from developers.

He has spent over $200M to buy 50,000+ acres of wilderness in North Carolina, using permanent legal protections to block any future logging or building.

[⚫️ Nina (same @ on Bsky) @notwaving]

LOL! Under 24hrs since I reported the theft of my wheelchair ramp from my dad's place, the Met Police have already closed the case because it's not worth the time or effort. Fabulous.
#disability #theft