worldduchenne Duchenne Stories

Story by Simen & Daniel

Hi! My boys have their own YouTube channel where they post what they do, different challenges and stuff they think is fun. One time they posted a video where they told about their disease. They are active with wheelchair hockey, and they travel on tournaments with the team. They are like other boys in the same age, busy with computers and gaming. Since we as parents are divorced they have two homes, witch means that they are lucky to get two birtdays, which they see as a positive thing.
Daniel wants to be a trainer for soccer. His favourite team is Tottenham, and he knows everything about english football!
Simen wants to work with animals, he just looove all kinds of animals.

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World Duchenne Awareness Day to take place 7 September 2021

September 7 is World Duchenne Awareness Day. On this day, the World Duchenne Organization raises awareness for Duchenne and Becker muscular dystrophy (DMD/BMD) around the globe. This year’s theme will be ‘Adult Life & Duchenne’.

Living adult life with Duchenne to the fullest

The number of adult men living with Duchenne is growing bigger every year. This can largely be attributed to better medical care, such as supportive ventilation and the use of preventive (cardiac) medication. These men want and deserve to live their lives to the fullest. This means they have the right to receive adequate care, have opportunities to live independently and to participate in society.

Knowledge of optimal care

However, the medical profession and society are often not ready to facilitate this. While knowledge of optimal care for pediatric patients has expanded considerably and the organization of care has improved for this group, there are no care guidelines so far for the adult men. Only very few studies are being done to gain evidence on optimal care. Care is often fragmented and there is a lack of specialized medical teams/centers for adult DMD care. In addition, educational institutions and employers are often not equipped with the necessary facilities and support systems, and too many facilities are just not accessible, leading to extreme frustration.

Although the first papers describing the challenges as seen by this group were published more than 15 years ago, and since then documentaries have been produced and workshops held on these topics, a lot of work still needs to be done to improve the situation for adults with DMD around the globe.

On September 7 during World Duchenne Awareness Day 2021, the World Duchenne Organization asks you to act and start or accelerate activities to provide appropriate support and improve accessibility so that adults with DMD can indeed live their lives to the fullest, receive adequate care, and be given the opportunity to live independently and to participate in society.

Breaking Barriers: World Duchenne Awareness Day 2023 Documentary Set to Launch
worldduchenne Duchenne: Breaking Barriers, News

Breaking Barriers: WDAD 2023 Documentary Set to Launch

On September 7, 2023, the World Duchenne Organization will be launching an impactful documentary titled ‘Duchenne: Breaking Barriers’. This will be done to mark World Duchenne Awareness Day (WDAD) 2023.

Directed by Nicoletta Madia, this documentary promises to be a powerful tribute to the lives of individuals living with Duchenne and Becker Muscular Dystrophy (DMD/BMD) around the world. The WDAD Documentary ‘Breaking Barriers’ fosters global awareness and understanding of dystrophinopathies through the power of storytelling.

WDAD 2023 Documentary

The theme ‘Duchenne: Breaking Barriers‘ aims to shed light on the remarkable journeys of people living with this rare disease, showcasing how they are each breaking barriers in their personal lives. One of the unique aspects of this documentary is that it is collecting experiences from different parts of the world, offering a global perspective on the struggles and triumphs faced by individuals with DMD/BMD.

The film takes viewers on a journey through various countries, including Turkey, Mexico, and Italy. Nicoletta Madia and her team have selected inspiring stories of courage and resilience. By sharing the experiences of people from diverse cultural backgrounds, the documentary highlights the different types of barriers people with Duchenne face and the innovative ways they challenge these obstacles.

Upon its launch on September 7, we urge everyone to share the Breaking Barriers WDAD 2023 Documentary. By doing so, we can amplify the voices of those living with DMD/BMD. Additionally, we can advocate for greater support, research, and resources to address their needs effectively.

Breaking Barriers

World Duchenne Awareness Day serves as a reminder that together, we can make a difference in the lives of those living with Duchenne and Becker MD. As the launch date approaches, please mark your calendars and make plans to share “Duchenne: Breaking Barriers” with your friends, family, and colleagues.

Stay tuned for the release of the Breaking Barriers WDAD 2023 Documentary on September 7. Join us in spreading the message with the world. Together, we can make an impact and create a better and more supportive world for people living with DMD/BMD.

Troy Chauppetta
worldduchenne Duchenne: Breaking Barriers, News

Breaking Barriers: The story of Troy Chauppetta

Meet Troy Chauppetta, a 28-year-old Duchenne Ambassador from Massachusetts. He’s a USA wheelchair Power soccer team player, graphic/website designer, and living independently. Troy defies odds with his hand-controlled vehicle, roommates, and dog. He has a strong message: Disability is ability. He’s breaking barriers and advancing Duchenne awareness through technology, support, and determination.

About Troy Chauppetta

“My name is Troy Chauppetta, a 28-year-old from Massachusetts, USA. I’m passionate about sports, playing for the USA wheelchair Power soccer team. I am all about independence, driving my vehicle with hand controls and living with roommates. I’m also a proud dog owner. When I’m not on the field or exploring with my dog, I channel my creativity as a Graphic Designer and website designer.”

Daily life with Duchenne

“My daily life with Duchenne is great defining all the odds. My Personal Care Assistants get me up and ready to take on the day. Most of my creative work is done on the computer. I take care of my apartment and make sure my dog is all set for the day. But as people know, living with a disability there are lots of ups and downs but I try to keep it positive. I have a twin brother who also has Duchenne and having each other helps me with the daily life living with Duchenne. Because I have someone always by my side that I relate to!

Duchenne Ambassador

“My motivation stems from a strong desire to share my journey, demonstrating that one can overcome challenges while living with a disability. I’m determined to inspire and show that defying the odds is possible.”

Interpreting ‘Breaking Barriers’

“To me, ‘Breaking Barriers’ signifies the ability to lead a fulfilling life despite a disability, achieving anything by harnessing determination and willpower. You can live a great life with a disability and do with you put your mind to.”

Key message

“My message is simple yet powerful: I want people living with Duchenne and Becker muscular dystrophy not to limit themselves just because they have a disability. I see the world Ability In disability you have the Ability to do with you dream.”

Future goals

Troy is positive when asked about the future in terms of breaking barriers and advancing awareness for Duchenne/Becker muscular dystrophy. “I see lots of wonderful things happening in the future with Advancing awareness with all the technology and advancements and the wonderful support groups we have!”

Looking forward, Troy is optimistic about the future, anticipating significant progress in awareness and support for Duchenne and Becker muscular dystrophy through the integration of technology and the unwavering strength of support networks.

We invite you to follow Troy Chauppetta’s inspiring story via social media. Inspire others to break down barriers in Duchenne or Becker by sharing your story.

Instagram: @_tc09t

Facebook: Troy Chauppetta