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World Duchenne Organization
Netherlands
Registrace 7. 02. 2018
Join the World Duchenne Organization in the journey to find a cure and viable treatment for those lives affected by Duchenne Muscular Dystrophy. More info: www.worldduchenne.org
Copyright notice: All videos are owned by the World Duchenne Organization. Reproduction and distribution in any form without the written permission of the World Duchenne Organization is prohibited. All rights reserved.
Medical disclaimer: Nothing posted on the channel is medical advice or a substitute for advice from your physician or healthcare provider. Always contact your physician or other healthcare provider with any questions about a medical condition or your personal health.
Copyright notice: All videos are owned by the World Duchenne Organization. Reproduction and distribution in any form without the written permission of the World Duchenne Organization is prohibited. All rights reserved.
Medical disclaimer: Nothing posted on the channel is medical advice or a substitute for advice from your physician or healthcare provider. Always contact your physician or other healthcare provider with any questions about a medical condition or your personal health.
Raise your voice for Duchenne: the documentary for World Duchenne Awareness Day 2024
The official documentary for World Duchenne Awareness Day 2024, directed by Nicoletta Madia and produced by Arim Communication. This inspiring documentary portrays the powerful stories of three individuals from different corners of the world, each living with Duchenne muscular dystrophy (DMD). Their journeys reveal how care, independence, support, inclusion, and education are essential in improving the quality of life for people affected by this condition.
The documentary takes viewers on a journey through:
- Rome, Italy: Misha, a young Russian boy living in Italy, discovers life with his big eyes, showing a vitality that transcends Duchenne. His story reflects the power of positivity and resilience in facing life’s challenges.
- Casar de Cáceres, Spain: Fernando builds his life by engaging deeply in his work and immersing himself in new worlds and cultures through the study of foreign languages. His narrative demonstrates how inclusion and access to education can empower people living with Duchenne to reach their full potential.
- Rio de Janeiro, Brazil: Bruno, a dedicated athlete, finds his passion and path to happiness in wheelchair football. Supported by his team, he represents the importance of community, sports, and self-expression in living a fulfilling life with Duchenne.
For more information, visit worldduchenneday.org
The documentary takes viewers on a journey through:
- Rome, Italy: Misha, a young Russian boy living in Italy, discovers life with his big eyes, showing a vitality that transcends Duchenne. His story reflects the power of positivity and resilience in facing life’s challenges.
- Casar de Cáceres, Spain: Fernando builds his life by engaging deeply in his work and immersing himself in new worlds and cultures through the study of foreign languages. His narrative demonstrates how inclusion and access to education can empower people living with Duchenne to reach their full potential.
- Rio de Janeiro, Brazil: Bruno, a dedicated athlete, finds his passion and path to happiness in wheelchair football. Supported by his team, he represents the importance of community, sports, and self-expression in living a fulfilling life with Duchenne.
For more information, visit worldduchenneday.org
zhlédnutí: 2 589
Video
TRAILER Raise your voice for Duchenne: the documentary
zhlédnutí 1KPřed dnem
🇮🇹 Rome, Misha, Russian, discovers Italy and life with his big eyes, with a vitality that goes beyond Duchenne. 🇪🇸 Casar de Cáceres, Spain. Fernando builds his life by engaging in work and losing himself in new worlds and cultures by studying foreign languages. 🇧🇷 Rio de Janeiro, Bruno, a champion who, with his team, found his life passion and his path to happiness in wheelchair football. Care,...
A message from Elizabeth Vroom: Raise your voice for Duchenne
zhlédnutí 277Před měsícem
On September 7th, we will celebrate the 11th World Duchenne Awareness Day (WDAD), a special day recognized globally. Since we started in 2014, this day has grown in significance, highlighting the importance of improving the lives of people with Duchenne Muscular Dystrophy (DMD) worldwide. This year, the theme of WDAD is ‘Raise your voice for Duchenne.’ This theme is not only for the Duchenne co...
Duchenne Care Conference 2024 - Day 1
zhlédnutí 704Před 3 měsíci
The Duchenne Care Conference plays a crucial role in advancing care and treatment for individuals with Duchenne muscular dystrophy. By providing a platform for sharing knowledge and promoting collaboration, the conference helps to improve the lives of those affected by the condition. Chapters: 2:18 Early signs - Prof. Em. Nathalie Goemans 22:15 Corticosteroids - Different steroids and regimes c...
Duchenne Care Conference 2024 - Day 2
zhlédnutí 411Před 3 měsíci
The Duchenne Care Conference plays a crucial role in advancing care and treatment for individuals with Duchenne muscular dystrophy. By providing a platform for sharing knowledge and promoting collaboration, the conference helps to improve the lives of those affected by the condition. Chapters: 2:12 Currently approved drugs for DMD around the globe - Prof. Annemieke Aartsma-Rus 36:23 Use of Air ...
Conférence Duchenne Care 2024 - Jour 1
zhlédnutí 192Před 3 měsíci
La Duchenne Care Conference joue un rôle crucial dans l’avancement des soins et du traitement des personnes atteintes de dystrophie musculaire de Duchenne. En fournissant une plateforme de partage des connaissances et de promotion de la collaboration, la conférence contribue à améliorer la vie des personnes touchées par cette maladie. La conférence est également disponible en anglais et en espa...
Conferencia de Tratamientos en Duchenne 2024 - Día 1
zhlédnutí 212Před 3 měsíci
La Conferencia de Tratamientos en Duchenne 2024 desempeña un papel crucial en el avance de la atención y el tratamiento de las personas con distrofia muscular de Duchenne. Al proporcionar una plataforma para compartir conocimientos y promover la colaboración, la conferencia ayuda a mejorar las vidas de las personas afectadas por esta afección. La conferencia también está disponible en inglés y ...
Conférence Duchenne Care 2024 - Jour 2
zhlédnutí 35Před 3 měsíci
La Duchenne Care Conference joue un rôle crucial dans l’avancement des soins et du traitement des personnes atteintes de dystrophie musculaire de Duchenne. En fournissant une plateforme de partage des connaissances et de promotion de la collaboration, la conférence contribue à améliorer la vie des personnes touchées par cette maladie. La conférence est également disponible en anglais et en espa...
Conferencia de Tratamientos en Duchenne 2024 - Día 2
zhlédnutí 191Před 3 měsíci
La Conferencia de Tratamientos en Duchenne 2024 desempeña un papel crucial en el avance de la atención y el tratamiento de las personas con distrofia muscular de Duchenne. Al proporcionar una plataforma para compartir conocimientos y promover la colaboración, la conferencia ayuda a mejorar las vidas de las personas afectadas por esta afección. La conferencia también está disponible en inglés y ...
WDO Webinar: Gene Therapy in Duchenne Muscular Dystrophy
zhlédnutí 1,4KPřed 10 měsíci
The WDO webinar on 'Gene Therapy in Duchenne Muscular Dystrophy,' held on November 7, 2023, delved into crucial aspects of gene therapy for DMD patients. Topics: 3:11 How gene therapy works - Prof Annemieke Aartsma-Rus 30:43 Managing serious adverse events (SAE) - Prof Eugenio Mercuri 50:38 Immune responses in gene therapy - Prof Francesco Muntoni 1:10:59 Gene therapy and the heart - Dr Chet Vi...
WDAD 2023 Documentary: Breaking Barriers
zhlédnutí 5KPřed rokem
The official documentary for World Duchenne Awareness Day 2023. The documentary, directed by Nicoletta Madia and produced by Arimvideo, is collecting stories from Italy, Turkey and Mexico about people living with Duchenne and their families and how they overcome barriers, everyday. A special thanks to our families and volunteers! © 2023 World Duchenne Organization. Medical disclaimer: Nothing p...
[TRAILER] World Duchenne Awareness Day 2023 Documentary: Breaking Barriers
zhlédnutí 470Před rokem
The World Duchenne Awareness Day 2023 Documentary: Breaking Barriers is ready for takeoff! Watch the trailer and stay tuned for the launch on September 7. More information: www.worldduchenneday.org
10 Years: World Duchenne Awareness Day
zhlédnutí 370Před rokem
Elizabeth Vroom looks back on 10 years of World Duchenne Awareness Day. Every year on September 7, since 2014, we raise global awareness about Duchenne and Becker muscular dystrophy. © 2023 World Duchenne Organization.
Duchenne Care Conference 2023 - Day 2
zhlédnutí 255Před rokem
The Duchenne Care Conference plays a crucial role in advancing care and treatment for individuals with Duchenne muscular dystrophy. By providing a platform for sharing knowledge and promoting collaboration, the conference helps to improve the lives of those affected by the condition. Whether you are a healthcare professional, researcher, advocate, or individual with DMD, the Duchenne Care Confe...
Duchenne Care Conference 2023 - Day 1
zhlédnutí 728Před rokem
The Duchenne Care Conference plays a crucial role in advancing care and treatment for individuals with Duchenne muscular dystrophy. By providing a platform for sharing knowledge and promoting collaboration, the conference helps to improve the lives of those affected by the condition. Whether you are a healthcare professional, researcher, advocate, or individual with DMD, the Duchenne Care Confe...
Consensus Guideline For The Standard Of Care Of Adults With DMD by Prof Ros Quinlivan
zhlédnutí 212Před rokem
Consensus Guideline For The Standard Of Care Of Adults With DMD by Prof Ros Quinlivan
Dutch Centers of Home Ventilation by Prof Peter Wijkstra
zhlédnutí 70Před rokem
Dutch Centers of Home Ventilation by Prof Peter Wijkstra
Chest clearance techniques by Charlotte Massey
zhlédnutí 78Před rokem
Chest clearance techniques by Charlotte Massey
Hospital without walls - Adult DMD Care in Denmark by Pia Zink Drivsholm
zhlédnutí 77Před rokem
Hospital without walls - Adult DMD Care in Denmark by Pia Zink Drivsholm
Evolution in the care of DMD by prof Nathalie Goemans
zhlédnutí 101Před rokem
Evolution in the care of DMD by prof Nathalie Goemans
Respiratory Management in Adult DMD by Fabrizio Racca
zhlédnutí 154Před rokem
Respiratory Management in Adult DMD by Fabrizio Racca
Técnicas de limpieza del pecho por Charlotte Massey
zhlédnutí 13Před rokem
Técnicas de limpieza del pecho por Charlotte Massey
Cardiology in Adult DMD by Prof Karim Wahbi
zhlédnutí 143Před rokem
Cardiology in Adult DMD by Prof Karim Wahbi
Endocrine issues in Adult DMD by Dr Jarod Wong
zhlédnutí 145Před rokem
Endocrine issues in Adult DMD by Dr Jarod Wong
Cardiología en la DMD adulta por el profesor Karim Wahbi
zhlédnutí 15Před rokem
Cardiología en la DMD adulta por el profesor Karim Wahbi
Больница без стен помощь при МДД у взрослых в Дании Пиа Цинк Дривсхольм
zhlédnutí 14Před rokem
Больница без стен помощь при МДД у взрослых в Дании Пиа Цинк Дривсхольм
USA Certified Duchenne Care Center for Adult DMD by Dr Doris Leung
zhlédnutí 35Před rokem
USA Certified Duchenne Care Center for Adult DMD by Dr Doris Leung
Guía de consenso para el cuidado estándar de adultos con DMD por el Prof Ros Quinlivan
zhlédnutí 58Před rokem
Guía de consenso para el cuidado estándar de adultos con DMD por el Prof Ros Quinlivan
Adult Duchenne Care Sweden by Prof Már Tulinius
zhlédnutí 88Před rokem
Adult Duchenne Care Sweden by Prof Már Tulinius
Management of swallowing issues in Duchenne MD by Jodi Allen
zhlédnutí 98Před rokem
Management of swallowing issues in Duchenne MD by Jodi Allen
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💔
❤❤❤
🧡🧡🧡
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?
Hi, the conference is available with Spanish and French interpretation. Please click the links below to find the playlists: Spanish: czcams.com/play/PLi4jXxW5UG9hyfCugNnAU8DpG7t9MHOqe.html French: czcams.com/play/PLi4jXxW5UG9ip8e1PIOywTtgnFQDemyKq.html
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!
❤
🙏❤️
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.
❤
Cow can I contact you?
👏🏻👏🏻👏🏻👏🏻👏🏻
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
Why would you want to be underweight exactly?
@@catguy4996 i think you know exactly why
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
Same with me I'm 5'3 and weigh 36kg, and people can be horrible sometimes.
@@tchaikovsky.pwell how old are you :)
Thank you for this great video! I am 49 with DMD and live a very fun and productive life.
i’m 11, 5”3 and 37kg. before i got sick i was around 42kg :/ now i’m back to being a skeleton again. i don’t know how to gain weight and make it sho on the outside. or maybe it’s because of genes
Don't lose hope.. you'll gain some weight. Wait for it.
Hi Sir My Brother Is Also Patient Of DMD Plz Give Me Information About Treatment And Also Cost Of Treatment We Will Be Thankfull To You
Hi Sir My Brother Is Also Patient Of DMD Plz Give Me Information About Treatment And Also Cost Of Treatment We Will Be Thankfull To You