วีดีโอ

How beautiful to do this with your friends making forever memories ❤

Thank you for raising awareness. Love from the Netherlands

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DMD💔

It's a great news. At the same time, we also want to suggest an idea of filming a similar documentary about Ukrainian Duchenne patients, who are waiting for their voice to be heard. They are waiting for this being shelled by russian bombs and missiles, either in Ukraine or having been forced to flee their native country and find shelter abroad. Some of these boys, I am sure, will be happy to share their story with the world.

Saioa, video interesgarria eta sentibera. Badakit zuen familia huanditu zela. BIHOTZEKO ZORIONAK.Hau da nere lehenengo aldia Komunikatzeko medio hau erabili dudala. Besarkada bat guztientzako.❤😊❤

My 7 year old nephew affected from dmd disease ...... Please tell me how to cure from dmd disease

No lleva nadie makina para respirar? Mi hijo por desgracia si.

DMD💔

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Im watching from phillipines.i have a son duchenne mascular dystrophy we are hoping that this program help to my son...

I would rather be underweight that overweight

Thanks for uploading the conferences. I just want to know if they will translate them or put subtitles in other languages?

Thanks.I am from Africa .I have muscular dysotrophy.I Use Weelchair.I always listen your conference .God Bless You.

Thanks for sharing this conference in social media

Can someone translate the video?

I think ? I'm too underweight & unhealthy at 70 kilos. My height is 168 cm & i'm a 49 year old male. Does anyone know what my correct body weight should be. Thanks

I know how difficult to wait for treatments because I have a daughter who is a manifesting patients of dmd. I really hope we all can be part of those treatments as well.

existe pouco conteudo sobre a distrofia em meninas, encontrei somente 01 no scielo de 1988, gostaria de saber mais para o meu tcc,

Great and all but all I see are these mostly extremely expensive (t0 be) medications. No love for low cost possible adjunctive treatments like Resveratrol, betaglucan, Nacetylglucosamine, Curcumin and a 2(to my mind) potentially prommising substance like astaxanthin. I advocate for quite some time and precisely one study on that and MDX-mice was performed in dec 2023. May be not a solution, almost certainly not, but then again no one thinks corticoids are anywhere near a solution let alone ar cure. Why no research these nutraceuticals given (some) promise, very good tolerability etc? In short there is no money to be made, which essentially means for the patients they would be comparetively extremely cheap. But that is not the goal of these companies of course. The argument of some phycisians is that they are unknown, not well studied etc. and therefor pose a risk. Sure and none of those who are saying that in fact are trying to change it, i.e. they are not performing any study as far as I know to change our knowledge on tha=eir safety profile nor effectiveness. So adjunctive therapy: steroids! With many times horrible side effects....Even Vamorolone still has quite a few unwanted side effects. Etc... Of course I hope soon this and many other (genetic) genesis will be taken care off, but meanwhile their cost to society is borderline prohibitive.

Is a BMI of 16-17 dangerous?

I am severely underweight but i have 0 appetite and i weigh 7 stone now at 50 years old my muscle mass is now becoming less I hate this its just as bad being ana as it is being overweight 😐

Please help me for DMD disease

It is sad that older ambulatory kiddos without the AAV antibodies are not given an exception, and allowed to participate in the trial for microdystrophin. Time is muscle. Please give these boys a chance at life.

انا مصاب لكن لم اقابل طبيب بعد 33عام واجهت تحديات وخاصه في التعليم والحمد لله احمل شهاده جامعيه واطمح في التصعيد ص

severe underweight all my life. people see this as a good thing. personally i don't care much. i try to eat more but it doesn't help.

Is that Sammy Super Star????

Grazie Italia

Gracias Nicoletta, es un gran trabajo el documental es genial 😊

HAY UNA VERSION EN ESPAÑOL ? ME MANDAN EL LINK ?

Eyes wet 🥹 Thank you for your work!

Thank you @worldduchenne and @dmd_aileleri

Great efforts but their need to be much more efforts.

An inspiring documentary. Great work and thank you for sharing this. I'm from Singapore.

Great Documentary, Special Thanks for ur efforts

I am 5'4 and i weight 94 lbs. I usually eat more than 4 meals a day, but i dont know why i still dont gain weight...

Thank you all, who helped these people...may God bless you!

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I'm almost 17, I am 170cm and 52 kg, which makes me slightly underweight

i don't know if im underweight, i eat a lot but Im 36kg. also my height is only 149cm , 20 years old female. maybe im just mildly underweight cause it all depends with the height.

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Cow can I contact you?

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I'm 5'3 and 36kg, that makes me underweight. I have had anorexia for around 3 years now, and it is just now getting better. I weigh less than my younger sister (who weighs over 20kg more than me but is still a healthy weight.) I eat 2 meals a day and sometimes snacks in-between. Sometimes it does feel like you can't gain weight, but, for those who are under/overweight, anything can happen, I believe in you! ❤❤

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Please help my daughter..she has muscular dystrophy..

I'm a healthy weight and im going to become underweight

I’m underweight and I think I’ve been my whole life and I’ve been made fun of for it... By classmates and family... sometimes friends but not really. I gained some pounds thankfully but I’m still underweight (im 4’10) Idk how much I weight