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Пікірлер
@RN-pg9xg 13 күн бұрын
Strong lady.
@baronghede2365 26 күн бұрын
Keep up, the good work everyone!
@IFOPA 25 күн бұрын
Thank you!
@David-u6v7m 29 күн бұрын
God bless you dear young lady.courage.my mother had fop.neither my father could walk.look to jesus he can help
@AlcottKing-n2s Ай бұрын
Gonzalez Ruth Martin Paul Jackson Jeffrey
@SuperGav Ай бұрын
This is a scary disease
@IFOPA 26 күн бұрын
It is a difficult disease, but there is great hope. The first drug was approved last year and there are four (soon to be five) active clinical trials. For an ultra-rare disease there is great interest in understanding the condition and developing treatments.
@MariaMartin-q8d Ай бұрын
Rodriguez George Miller David Thomas George
@David-u6v7m Ай бұрын
God speed I am praying for a cure . I hopè that god blesses your efforts my mother had fop. I'm wondering about if my grand kids can i herit this.one of my kids has a bumpy spi ne twisted calls himself li zard man could he have fop. His big toe is not short like mama's. Sorry to bother you. Praying god to help the people of all ages with fop. May god work a miracle. Bombard heave with our prayers worldwide.mayhap god willl give us acure I watchedmy mother suffer so much.howi feel their suffering.will my kids pass this to their kids.both parents couldn't walk.so happy to see this makesy heart sing to see such dedication to find a cure.may soo.n talk about fop as adisease that once was but is no more
@IFOPA 26 күн бұрын
You could email us at [email protected] to ask more questions. But, essentially, if your mother didn't pass FOP to one of her children, then it has stopped. It does not skip generations. We do offer a Bereaved Families Support Group. If you email us, we can share more information.
@David-u6v7m Ай бұрын
My moʻther had this dread disease. She died in 1972. God speed I'm praying for acure Prray bomb heaven with a payer for a cure
@David-u6v7m Ай бұрын
Dont let fop stop your dreams.god be with you each day
@David-u6v7m Ай бұрын
A beautiful spirit young lady. Like my daer mother.she tried so hard fop took so much from her. God's word gave her strength.jesus will help you to fight.lord jesus help I pray. Neither of parents could wslk
@David-u6v7m Ай бұрын
My mother had this my sons back is messed up can he have it
@David-u6v7m Ай бұрын
The lady has my sympathy no more impathy my dear mother had fop God bless you strengthen you See you at jesus feet with no fop😊
@GraceCalvin-f2y Ай бұрын
Robinson Sharon Lee Lisa Robinson Richard
@LuciusFrederica Ай бұрын
Jones Jason White Daniel Lopez Lisa
@krysomish Ай бұрын
Я 6 лет назад то же самое слышала от работающих над лекарством. Почему так медленно все происходит у них?
@IFOPA 26 күн бұрын
The clinical trial process does take many years. The companies and then the regulatory agencies (like Russia's Ministry of Health, US FDA and EMA) want to make sure that there is enough data to make sure it's safe and that the benefits are worth the risk of taking the drug. They also have to make sure there is a way to manufacture and deliver the drug to patients once it's approved. If you have more questions, email us at [email protected]
@julesoxana 2 ай бұрын
She is so gorgeous❤ Praying for a cure for FOP asap✝️🙏❤️
@musicobueno1 2 ай бұрын
Dr. God bless you for the efforts you make to cure F.O.P. May divine providence put all the wisdom in the world in your brain so that once and for all, it puts an end to this terrible disease that brutally punishes many human beings. God will enlighten you and put in your hands all the possible tools so that you can discover the way to deactivate the ACVR1 gene and put an end to that prison of bones once and for all. God bless him.
@iamsehaj_43 2 ай бұрын
❤
@Sk_dayyy 2 ай бұрын
Link
@KennedyAdolph 2 ай бұрын
64848 Moriah Motorway
@suedupre5031 2 ай бұрын
Thanks so much for this update. I try to keep my past and future donors informed about the specific research projects that are taking place with the IFOPA's help. I'll make sure they get a chance to see this video.
@IFOPA 2 ай бұрын
I am so glad you found it helpful! They can also read more at ifopa.org/updates
@jennav5648 3 ай бұрын
what a beautiful couple. and dear Lord, that man is so wonderful, so caring, so loving.
@IFOPA 3 ай бұрын
We agree!
@aronlelenora9572 3 ай бұрын
❤❤❤❤
@galacticmoth 3 ай бұрын
I remember her when she was more mobile. I hope a cure comes soon.
@StoutShako 3 ай бұрын
Keep fighting, Vince~
@behuman3801 3 ай бұрын
Ameen Allah Will Grant you complete cure Ameen
@MP-vy7ot 3 ай бұрын
Poor woman 😢😢 so adorable and so unlucky!
@davidjslack 5 ай бұрын
That’s awesome!
@mrsuali8958 5 ай бұрын
Salam moiz, how to support you for your treatment please?
@DennisM-wp7jt 6 ай бұрын
And people still believe in god folk. Let that sink in. They worship a man who creates a world were such things are possible.
@mariadelaluzzamoraruiz8287 7 ай бұрын
Siempre estaremos agradecidos a todo el personal de la Asociación de Ifopa. Es un gran apoyo para todos los pacientes con FOP, así como para nosotros como familia. Dios los siga bendiciendo
@IFOPA 7 ай бұрын
Es un honor para nosotros trabajar con su familia y todos aquellos que viven con FOP.
@sueg7174 7 ай бұрын
Thank you for explaining your condition. I hope your life continues well for you.
@eazyhold684 7 ай бұрын
Such a wonderful presentation, thank you for including us in your toolbox!
@zupapitorowaa 8 ай бұрын
There's one character in my book and he has FOP. At first, he uses crutches to get around, however at the end of part 1 (chapter 31) he's seen in a wheelchair, which indicates he won't be able to walk very soon... and also he lost his ability to swallow due to this horrible disease. He got a feeding tube November 28th 2019.
@daysgoneby3527 9 ай бұрын
Who can I talk to about this stuff and what’s available? I want to find out how hard it is to do this for a specific gene, if they could do it if it isn’t one they have in their list. I want to know if they can replace the CAV1 gene.
@abdulhadikhan3136 10 ай бұрын
Allah pak sehat ata kre
@HeyDerr-h7u 10 ай бұрын
I also wanted to see how Nancy was doing; she looks amazing!!
@HeyDerr-h7u 10 ай бұрын
This is so beautiful! Rest in peace to all of those who have passed. 🤍
@davnet5247 10 ай бұрын
bryan marty
@Tissues9738 10 ай бұрын
I wonder when there would be a cure for f.o.p. as it is scary if you actually think of ligaments becoming bone
@LBPreviews 10 ай бұрын
She's honestly beautiful.
@SeherMustafa-h5s 11 ай бұрын
He is a 4-year-old child who has FOB syndrome. His disease was diagnosed within three weeks, and his father is now in Germany. The child’s psychology is very bad and he needs his father.
@SeherMustafa-h5s 11 ай бұрын
We have evidence and pictures to confirm it. Only someone can contact us and help us
@SeherMustafa-h5s 11 ай бұрын
My child has the same disease fop and we are in Syria and his father is now in Germany. Is there anyone who can help us? The child’s psychology is very bad and he needs his father.
@ahmadbakro6062 11 ай бұрын
Hello. Can you help me? A 5-year-old child with FOP syndrome. He lives in Syria. Can anyone help?
@ahmadbakro6062 11 ай бұрын
Hello. Can you help me? A 5-year-old child with FOP syndrome. He lives in Syria. Can anyone help?
@ahmadbakro6062 11 ай бұрын
Hello. Can you help me? A 5-year-old child with FOP syndrome. He lives in Syria. Can anyone help?
@IFOPA 11 ай бұрын
Could you please email us at [email protected]?
@ahmadbakro6062 11 ай бұрын
Hello. Can you help me? A 5-year-old child with FOP syndrome. He lives in Syria. Can anyone help?
@Tissues9738 10 ай бұрын
There is no cure or vaccine so sadly I can't really do anything about it.
@YuuSlez 8 ай бұрын
Nature can be sometimes cruel and unfair 😢 Can't imagine living my life unable to escape my fate.
@MarcoFiemme 7 ай бұрын
Is he doing okay?
@wolfiethetimberwolf1363 6 ай бұрын
How much pain is he in?
@cupricwheat 6 ай бұрын
We can't do nothing about FOP, it has no vaccine nor a cure, so he has to deal with it, it's sound cruel, but that's natures barbaric and brutal side.
@nathaliegaud3593 Жыл бұрын
As a mother with a child disability I know what you guys are going through stay strong and I am praying 🙏
@FarukShabanOmar Жыл бұрын
0:14 Transcendence