worldduchenne News, Raise your Voice for Duchenne

Today is World Duchenne Awareness Day 2024

Rome, 7 September 2024 – Today is World Duchenne Awareness Day 2024! With this year’s theme ‘Raise your voice for Duchenne’ we call on everyone to use your voice to raise awareness for people living with dystrophinopathies.

Recognition and blessings

This year marks an important milestone as the United Nations have officially designated September 7th as World Duchenne Awareness Day, to be observed annually from 2024 onward. This is the UN’s first formal recognition of a day dedicated to a rare disease. This emphasizes the global need for awareness and support for individuals living with dystrophinopathies, such as Duchenne muscular dystrophy (DMD).

Secondly, the European Parliament, under the patronage of President Roberta Metsola, has officially endorsed World Duchenne Awareness Day 2024. This underscores the importance of European solidarity and commitment to the rights, care, and inclusion of those affected by DMD. Additionally, Pope Francis has once again given his blessing for this day. He supports the global call for compassion, understanding, and advocacy for people living with rare diseases.

WDAD 2024 documentary

The World Duchenne Organization is launching an official documentary directed by Nicoletta Madia and produced by Arim Communication. This documentary brings to light the powerful stories of three individuals from Italy, Spain, and Brazil, each living with Duchenne muscular dystrophy. Through their experiences, the documentary highlights the themes of care, independence, support, inclusion, and education, showcasing the strength and resilience of those living with DMD.

Raise your voice for Duchenne

We urge everyone to watch and share this documentary widely to amplify these voices and raise global awareness about DMD. Together, we can create a world where people with Duchenne can live fully and in accordance with the rights they have.

 

Contact: World Duchenne Organization

[email protected]

About World Duchenne Awareness Day

World Duchenne Awareness Day (WDAD) raises global awareness about Duchenne and Becker muscular dystrophy (DMD and BMD). It takes place each year on September 7. The day promotes action through events and landmark lighting in red to support those affected. Established in 2013, WDAD raises awareness to improve the lives of the over 250,000 people worldwide living with these rare genetic disorders.

worldduchenne News, Raise your Voice for Duchenne

A message from Pope Francis for World Duchenne Awareness Day

The World Duchenne Organization is grateful to receive a message from Pope Francis. This year, he is once again giving his blessing for World Duchenne Awareness Day.

Below, you can find the official message from Pope Francis. We are giving thanks to the President of ADM Argentina Santiago Ordóñez for this opportunity.

Read the Pope's blessing
The message from Pope Francis

Vatican, 7 September 2024

Dear brothers,

On World Duchenne Awareness Day for Duchenne and Becker Muscular Dystrophy, I send a greeting of hope to all the boys and young men affected by this disease. I pray for you and your families, so that you may never lose hope and the joy of living.

I congratulate and encourage patient organizations around the world for the service they provide advocating for the rights and well-being of people living with this disease.

I ask you to pray for me. May God bless you.

Fraternally,

Francis

worldduchenne News, Raise your Voice for Duchenne

Trailer for WDAD 2024 documentary out now

The trailer for the World Duchenne Awareness Day 2024 documentary is now live. The documentary, titled ‘Raise your voice for Duchenne: the documentary’ tells the stories of people living with Duchenne throughout the world, and how they are raising their voice to live their best life possible.

Stay tuned for September 7 for the official launch of the documentary!

🇮🇹 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, network, independence, support, inclusion, education are the words that link these stories. These are the words that tell us about the rights of people with Duchenne, how to live them fully and protect them.

Trailer of WDAD 2024 documentary

The documentary of World Duchenne Organization is directed by Nicoletta Madia and produced by Arim Communication.

 

worldduchenne News, Raise your Voice for Duchenne

A message from Elizabeth Vroom: Raise your voice for Duchenne

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. In this video, Elizabeth is calling on all to join World Duchenne Awareness Day and raise your voice for Duchenne muscular dystrophy.

This year, the theme of WDAD is ‘Raise your voice for Duchenne.’ This theme is not only for the Duchenne community but also aims to involve society at large. The goal is to ensure that individuals with Duchenne can live fulfilling lives without being hindered by the challenges that people with disabilities often face.

This includes advocating for accessibility in public transportation, leisure activities, jobs, and education. Accessibility is everywhere, and it is clearly described in legislation and proposals from the United Nations and the European Committee, that accessibility is a human right.

However, many people with Duchenne still are hindered due to the lack of implementation of these accessibility standards, leading to discrimination. Although not the biggest challenge that Duchenne patients are facing, all organizations are working hard to address this issue. Independent living should be another guaranteed human right we have to fight for around the globe. We should do our very best to make this life possible within their position.

The United Nations clearly mentioned when they recognized World Duchenne Awareness Day that access to proper diagnosis is very important for Duchenne, as it is essential to have access to good care and support. Without a diagnosis it is really hard to get the support you need.

 

worldduchenne News, Raise your Voice for Duchenne

World Duchenne Awareness Day 2024 granted patronage by European Parliament

Amsterdam, 18 June 2024 — The European Parliament has officially granted its patronage to World Duchenne Awareness Day 2024, which will take place on 7 September 2024. This endorsement was granted by Roberta Metsola, President of the European Parliament.

We are honored to receive the patronage for World Duchenne Awareness Day 2024, and receiving recognition for this cornerstone event for the Duchenne community. This year’s theme is ‘Raise your voice for Duchenne‘.

The announcement is following the United Nations official designation of September 7th as World Duchenne Awareness Day. The resolution, adopted by consensus unanimously by all Member States, was the UN’s first formal acknowledgment of a day dedicated to a rare disease.

“This endorsement by the European Parliament is a huge boost for the visibility of Duchenne, and the World Duchenne Awareness Day”, says Elizabeth Vroom, chair of the World Duchenne Organization. “In addition to attracting media attention and public interest, hopefully it can gather more momentum for our ongoing advocacy efforts for policies that create better lives for people living with dystrophinopathies.”

The World Duchenne Organization would like to thank the European Parliament and in particular Mrs Metsola for this acknowledgement.

worldduchenne News, Raise your Voice for Duchenne

2024: Raise Your Voice for Duchenne

Raise your voice for Duchenne

The World Duchenne Awareness Day 2024 theme is ‘Raise your voice for Duchenne’. World Duchenne Awareness Day (WDAD) is an annual event held on September 7. With this year’s theme, WDAD supports creating a society that provides equal opportunities for all. This year we organize the 11th edition.

This year’s theme emphasizes the importance of amplifying voices to advocate for the rights, inclusion and well-being of people living with Duchenne muscular dystrophy (DMD) and other dystrophinopathies.

On September 7 we invite everyone, irrespective of their personal connection to Duchenne, to join in creating a more inclusive world where people living with disabilities are empowered to thrive.

Read full press release

WDAD Documentary

On September 7, the World Duchenne Organization will launch a WDAD documentary that portrays the lives of people living with Duchenne Muscular Dystrophy across the globe and to share their journeys, challenges, and successes. The documentary captures the resilience and determination of the Duchenne community in building positive change everyday.

For inquiries, please contact Suzie-Ann Bakker, communications coordinator at the World Duchenne Organization.

worldduchenne News

United Nations Officially Designates September 7 as World Duchenne Awareness Day

The United Nations has marked a momentous milestone for the global rare disease community by officially designating September 7th as World Duchenne Awareness Day, set to be observed annually from 2024. The adoption of the resolution “World Duchenne Awareness Day” is the UN’s first formal acknowledgment of a day dedicated to a rare disease.

The adoption of the resolution required a total of 97 votes from Member States. However, as a testament to the collaborative efforts and dedication of advocates, patient organizations, and key individuals, the resolution was adopted by consensus unanimously by all Member States on November 29. The resolution was co-sponsored by 128 Member States, the highest number of co-sponsorships in the 78th session as of today for a resolution tabled by one country.

 

Watch the UN Recognition of World Duchenne Awareness Day

 

The success of this initiative can be attributed to the collective efforts of individuals and Duchenne-focused organizations around the world. Spearheading this global movement were H.E. Mr. Tareq Albanai, Kuwait’s Permanent Representative to the United Nations, and his wife Rasha Alnaibari. Their dedication and advocacy stem from personal experience, as their son Bazi lives with Duchenne. Rasha Alnaibari’s role extends beyond her family’s advocacy; she is also a member of the Board of Directors at Parent Project Muscular Dystrophy (PPMD), a U.S. non-profit and member organization of the World Duchenne Organization (WDO). The family’s pledge to raise awareness for Duchenne and advocate for its global recognition has been instrumental in reaching this significant milestone.

The World Duchenne Organization, along with its members and affiliates, proudly heralds the establishment of September 7th as World Duchenne Awareness Day (WDAD). This acknowledgment marks a significant advancement in the ongoing battle against Duchenne muscular dystrophy, a rare genetic disorder impacting families across the globe.

Elizabeth Vroom and Nicoletta Madia, the founders of WDAD, express their joy at the official recognition. “A decade ago, this day started as an idea at a kitchen table in Amsterdam. It’s incredible to witness how, with the support and help of the global community, it has evolved into this worldwide movement that is impacting the lives of people living with Duchenne and Becker muscular dystrophy. We remain committed to organizing WDAD and ensuring we continue to raise awareness on specific topics that are important to the community.”

Patient organizations played a crucial role in rallying support for the resolution, employing grassroots tactics like writing to their respective country’s Permanent Representatives to the UN. This approach showcased the Duchenne community’s solidarity and strength.

The foundations for this historic occasion were laid at an event titled “Leaving No One Behind: Igniting Awareness for Duchenne Muscular Dystrophy” hosted by the Permanent Mission of the State of Kuwait in New York City on November 15th. There, Pat Furlong, CEO and President of PPMD, and patient advocate Buddy Cassidy fervently supported the resolution, engaging with United Nations Ambassadors and Diplomats and World Health Organization members. Their advocacy provided valuable insight into both the challenges and potential solutions for the Duchenne community.

Furlong emphasizes the profound impact of the resolution’s passage, expressing, “By fostering a deeper understanding of Duchenne, we can empower communities, healthcare professionals, and policymakers to prioritize early diagnosis, intervention, and support for these individuals and their families.”

As we celebrate this momentous occasion, the World Duchenne Organization and its member organizations eagerly anticipate using this recognition to further educate and engage the global community in combating Duchenne muscular dystrophy.

For media inquiries about the UN recognition of World Duchenne Awareness Day, please contact:

Emily Zavrel – [email protected]

Nicoletta Madia – [email protected]

worldduchenne Duchenne: Breaking Barriers, News

Breaking Barriers: The story of Lizanne Schreur

Lizanne Schreur (23) is a woman living with Duchenne muscular dystrophy (DMD), a condition that predominantly affects males. In this interview, she shares her remarkable journey and the impact of DMD on her life, dreams, and aspirations. Moreover, as a Duchenne Ambassador, Lizanne is committed to breaking down barriers and raising awareness about the unique challenges faced by women living with DMD.

About Lizanne Schreur

As Lizanne introduces herself, she says, “Hi there! I’m Lizanne Schreur, a 23-year-old woman from a little country called the Netherlands. It’s quite unusual, but I’m one of the rare women living with Duchenne muscular dystrophy (DMD).” Born on April 23, 2000, her journey with DMD took an unexpected turn when she began crawling late at 1.5 years old. It wasn’t until then that her parents decided to seek medical advice, eventually leading to the diagnosis of Duchenne. In her early years, Lizanne’s life seemed relatively smooth, with regular hospital visits and heightened fatigue serving as early indicators of her condition. The true challenge presented itself at 16 when she began to fear the possibility of being confined to a wheelchair. Despite these adversities, Lizanne continues to take pride in her ability to make transfers with assistance and stand with help, cherishing the joys of a fulfilling life.

Daily life with Duchenne

In response to how DMD has impacted her daily life and dreams, Lizanne shares her vulnerability. “DMD took a toll on my mental health, leading to depression and self-harming tendencies. The COVID-19 pandemic only intensified these struggles.” Her journey also led her to develop Body Dysmorphic Disorder (BDD), which led her to fixate on perceived physical flaws, such as her shoulders. The absence of a romantic relationship further fueled self-doubt, causing Lizanne to question her self-worth. However, she remains steadfast in her pursuit of self-esteem and uses writing novels as an escape from the constraints of her disability. Remarkably, DMD did not deter Lizanne from her dreams; she pursued education in the UK for six enriching years and even had the opportunity to meet her idol.

Duchenne Ambassador

Asked about her motivation to become an ambassador, Lizanne reflects, “What sets me apart is being a woman with DMD, a rarity in the DMD landscape.” When presented with the opportunity to be the face of WDAD 2022, she realized the profound impact her story could have on other women living with DMD. “It’s vital to acknowledge that women can have DMD too,” Lizanne asserts passionately, aiming to erase the frustration of being overlooked. As an ambassador, she is committed to helping people understand that every life matters.

Interpreting ‘Breaking Barriers’

Delving into the theme of “Breaking Down Barriers,” Lizanne offers her perspective, stating, “This year’s theme, ‘Breaking Down Barriers,’ signifies the importance of connection and mutual respect.” She emphasizes that breaking down barriers means fostering understanding and respect for those with disabilities, promoting their inclusion in society. In her eyes, “No one should feel unwanted or disrespected just because they appear different. We’re all human.”

Key message

Lizanne’s message is simple yet profound: “My message is simple: Every individual is unique and beautiful in their own way, regardless of their background, abilities, or appearance.” She believes that imperfections are what make us perfect and encourages everyone to embrace their individuality.

Future goals

As she envisions the future, Lizanne expresses her desire for greater awareness surrounding women living with Duchenne, hoping to fill the gap she experienced growing up. Furthermore, she yearns for a society that fully embraces diversity and actively dismantles the barriers that marginalize individuals like her. Her dream is for everyone to feel valued and accepted, irrespective of their differences.

In Lizanne Schreur’s remarkable journey, we find not just a story of resilience, but an inspirational call to break down barriers and embrace the uniqueness within us all. Her unwavering determination serves as a powerful reminder that our imperfections are what truly make us perfect.

 

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

Instagram: @lizanneschreur

Facebook: Lizanne Schreur

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WDAD Documentary: Breaking Barriers

The official documentary for World Duchenne Awareness Day 2023 is now live! The WDAD Documentary: Breaking Barriers is directed by Nicoletta Madia and produced by Arimvideo.

The documentary is portraying stories from Italy, Turkey and Mexico about people living with Duchenne and their families and how they overcome barriers, everyday.

The official theme for World Duchenne Awareness Day 2023 is Breaking Barriers. People living with Duchenne and Becker muscular dystrophy (DMD/BMD) face physical, healthcare and social barriers. This severely limits their ability to participate fully in community life and activities. That’s why on September 7th we call on you to take on responsibility and help break down barriers for people living with DMD/BMD. Only together as a society can we create an inclusive society and build a better future.

WDAD Documentary: Breaking Barriers

 

The World Duchenne Organization would like to send special thanks to the families and volunteers who participated in the creation of this documentary.

 

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