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FOP Awareness Video

Int'l Fibrodysplasia Ossificans Progressiva Assoc

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💚 FOP (Fibrodysplasia Ossificans Progressiva) is an ultra-rare disease that turns muscle into bone, obstructing movement and hindering lives: ifopa.org/what...
🌎 The International FOP Association (IFOPA) is here to help find a cure through funding research, raising awareness, and supporting the community: ifopa.org/abou...
👋🏽 CONNECT:
IFOPA
/ cure_fop
/ ifopa
/ international-fop-asso...
📬 Sign up for the newsletter and stay on top of the community and the path towards a cure: ifopa.org/connect
👨‍👩‍👧‍👦 Register for the next Family Gathering: ifopa.org/fami.... Relive sessions from past Gatherings: ifopa.org/fami...
🛠️ Check out the Ability Toolbox Guidebook featuring tools and home adaptations for independent living: guidebook.ifop...
📆 Get involved with our family services, fundraising and awareness events: ifopa.org/cale...
📗 Learn the scientific terminology surrounding FOP in the IFOPA Glossary: ifopa.org/glos...
❤️ DONATE and join us to fight FOP and support families in their journey: ifopa.org/donate
🙋🏽 FOP Frequently Asked Questions: ifopa.org/fop_faq
#cureFOP #RareDisease #disability #RAREParenting #caregiver

Опубликовано:

21 авг 2024

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Комментарии : 52

@michellezhai938 Год назад

Currently I’m working on a clinical trial phase 3 for the treatment of FOP, I have never been so proud of my job even though I went through many hard times but at the end it’s worthy!

@paboland_ Год назад

thats amazing!!!

@wrestlingfan2024 Год назад

God bless you.

@dyawr Год назад

Oh my God, congratulations! Godspeed 🙏

@lildebbie997 5 лет назад

God bless the patients, mothers, fathers and physicians fighting this diagnosis.

@directioner2870 3 года назад

And biologists... they're the ones who are fighting for having a cure 🥺🌸🌸🌸🌸🌸🌸🌸🌸

@Squidlark 4 года назад

"The thing I learnt is that you just suck it up." That's an awful thing to hear young child say

@Ichthus61 4 года назад

I actually knew a woman who had this. She was almost completely unable to move and passed away. I pray for a cure for this awful condition’

@brooklyntitiyani5418 3 года назад

I never realized how much things we have to be greatful for

@manjitabaral6094 3 года назад

I just wish that one day all these incurable diseases will be cured and no one have to suffer 😭😭

@ayshaaqib9722 2 года назад

Ameen

@FrankWhite437 11 месяцев назад

Its called death

@nobbut4u Год назад

Watching this makes me cry, those people are so amazing and strong. My heart broke when the parents explained their children's condition. I hope they have a nice day everyday.

@DavidKehley 3 года назад

Watching this makes me want to cry I feel so bad for all these people with FOP god bless that doctor for all his research

@das2003 2 года назад

These poor people. God bless them.

@AnkushSharma-zv5hv 4 года назад

god bless them..we need more funding for medical research

@c.joyceb.8991 4 года назад

This is horrible. Very hard to see your child go through this disease, the parents and Josh must be so strong.

@nathaliegaud3593 8 месяцев назад

As a mother with a child disability I know what you guys are going through stay strong and I am praying 🙏

@sugartea6982 3 года назад

Just take a second to appreciate that you can move your bones right now....

@arlenedrake9305 11 месяцев назад

So heart breaking

@wrestlingfan2024 Год назад

Please, Father God, give scientists and doctors the wisdom and knowledge to find a cure as soon as possible so that these people do not have to suffer anymore. In Jesus’ name, Amen.

@topscream8840 4 года назад

It's even rarer though, if it would be rarity of 1 of 2 000 000, there would be at least 4 000 in the world, but there are about just 700 known cases

@DeeZnuts-to2bp 4 года назад

That figure was based of the USA smart ass

@topscream8840 4 года назад

Dee Znuts Damn, someones having a rough day, especially based on the fact i posted that comment 5 months ago, but still you just want to be a bitch about it

@dyawr Год назад

Key word is 'known'. They figured this rate based on how prevalent it is in the US & other developed countries (with good record-keeping & quality health services), probably. Bc a lot of doctors in rural areas, for example, prob wouldn't even know how to diagnose this disease or think of it at all...

@ayshaaqib9722 2 года назад

I m from Pakistan and my 5 year girl also have FOP. I. Wish to have all of these wheel chair like equipments for her.but it is not possible in this country.

@IFOPA 2 года назад

Could you please email us at together@ifopa.org? We would like to share some information with you

@kieranfallon818 2 года назад

How do I contact them

@hariawatinorhidayah9424 Год назад

i wanna knw more about fop..about what they cant do and can do..my son 10years old this year and we already knw that he's suffer due of this pain fop..its already 2years that we know it n still dont knw how to take care..at the month of july he got flu then make he breath too hard,we felt so woried..plz share with me how to care and how to make he felt easy becouse of fop he got hearing problem.

@treysocrazy1383 3 года назад

Is there a cure because I'm tired of living with fop it hurts

@kozumelubs1574 3 года назад

What is the symptoms of fop ??? PLEASE TELL ME IM VERY SCARED CUZ MY BONE HURTS SOMETIMES

@kimbokim927 3 года назад

@@kozumelubs1574 serious stop worrying...it was said in the video one of the first signs is a disformed big toe ....you bone hurts sometimes....so does alot of peoples ....8/10 peoples will, go to a doctor ....there's thousands of reasons why.....to jump to FOP is ridiculous

@kozumelubs1574 3 года назад

@@kimbokim927 My toe is a bit deformed and I'm very scared

@kimbokim927 3 года назад

@@kozumelubs1574 you're probs seeing things that a nomral but u think are deformed ....theres only 200 cases of this in the world....i highligh doubt u have this RA can disform peoples toes and fingers...why are u jumping so this consulison ? im pretty sure u would know if u had this....u would have more done growth ...lumps ....just because your bones hurt means nothing...i hurt everyday ...your worrying would help your pain btw...stop looking on the internet for answers and go to your doctor

@WillowClarke-qz5xd 3 месяца назад

stopppppp cause i have poh and the amount of people saying they might have it is so annoying like 160 people world wide have it I doubt you do

@hannahvivi7042 4 года назад

How are some kids diagnosed so much later than others?

@someonefinds2731 4 года назад

Some kids just have the FOP triggered later than others and it's hard to know what makes it flare up bc every case is a little different. Hope this helps!!

@fishyfishy7148 4 года назад

Is fop happen when we are born if we do have it

@onetwocue 3 года назад

You have it. It's a genetic disease. It's not a mutation like down syndrome or getting cancer from tobacco use. Its kinda like being born with blonde hair. It's genetics.

@fishyfishy7148 3 года назад

@@onetwocue no I meant does it happen when your born I don't have it I'm just asking