World Duchenne Awareness Day highlights a year-round effort to improve adult life in Duchenne

On 7 September 2021, many activities around the world were organized on the occasion of World Duchenne Awareness Day. Awareness-raising events were hosted in many countries by organizations, companies, healthcare professionals and families. This article summarizes World Duchenne Awareness Day 2021 events involving thousands of people across the world, under the theme ‘Adult Life & Duchenne’.

The 8th World Duchenne Awareness Day was a reminder of the importance of creating opportunities to improve the lives of adults living with Duchenne muscular dystrophy (DMD).

The World Duchenne Organization would like to thank everyone who created and participated in activities that were organized throughout the world. Elizabeth Vroom, chair: “During this extraordinary day, we were happy to see this big movement about the globe and the willingness to take action to achieve the goal of this day. Adults with Duchenne should be able to receive adequate care, have opportunities to live an independent life and to participate in society.”

Online Event on Adult Life & Duchenne

The World Duchenne Organization hosted an online event on Adult Life & Duchenne. The event gathered people from 59 countries to listen to stories and experiences surrounding DMD and adult life. The aim was not only to inspire and empower young adults with Duchenne and their families to think and plan for the future, but also call for global action to everyone involved to facilitate adults with Duchenne to live a full life including, social participation, jobs, independence and provision of optimal health care.

Apart from experts sharing their take on adult life, multiple interviews highlighted the perspective of adults living with Duchenne. In addition to care, other important aspects that were discussed included mental wellbeing, future perspective, and disability rights.

Consensus Guidelines for Adult Duchenne Care

With increased life expectancy for people living with Duchenne MD, new medical needs need to be addressed in international standards of care. The Journal of Neuromuscular Diseases published on WDAD the Consensus Guidelines for Adult Duchenne Care. Catherine Woodhead, Chief Executive of Muscular Dystrophy UK said: “I am extremely pleased that Muscular Dystrophy UK has been able to fund and support the development of the first published best practice standards of care for adults living with Duchenne muscular dystrophy. We hope that the pioneering work of Professor Ros Quinlivan and the Adult NorthStar Network will help to improve the consistency of high quality care for adults with Duchenne in the UK, but also across the world as these recommendations are adopted in other countries.”

Illuminated landmarks

As the evening set in on September 7, famous buildings, landmarks and monuments were lighting up in red to raise awareness for the rare muscle wasting disease. The Niagara Falls (Canada), Torre Glòries (Spain), and Legislatura (Chile), are only few of the many red landmarks. Next to a wave of red light, some of the initiatives included the projection of the logo, such as on the Stedelijk Museum (Netherlands).

Next Steps

The World Duchenne Organization is planning a series of webinars regarding adult life in Duchenne. Each webinar will focus on a specific care aspect. The Duchenne Care Conference that is taking place in April 2022 will be dedicated as well on Adult Life & Duchenne.

World Duchenne Awareness Day

World Duchenne Awareness Day has been celebrated annually by the Duchenne and Becker community since 2014. It aims to raise awareness and inspire action to improve life quantity and quality of people living with Duchenne and Becker muscular dystrophy. Through World Duchenne Awareness Day, the World Duchenne Organization works to highlight important aspects that deserve more attention.

Consensus Guideline for Adult Duchenne Care

Today on World Duchenne Awareness Day, the Journal of Neuromuscular Diseases published the consensus guideline for adult Duchenne care. The publication can be accessed by clicking on the link below. We are grateful for professor Ros Quinlivan for taking the lead on this, and would like to thank the Adult North Star Network (ANSN) and Muscular Dystrophy UK for their contributions.  

Adult North Star Network (ANSN): Consensus Guideline For The Standard Of Care Of Adults With Duchenne Muscular Dystrophy. 

Abstract

There are growing numbers of adults with Duchenne Muscular Dystrophy living well into their fourth decade. These patients have complex medical needs that to date have not been addressed in the International standards of care. We sought to create a consensus based standard of care through a series of multi-disciplinary workshops with specialists from a wide range of clinical areas: Neurology, Cardiology, Respiratory Medicine, Gastroenterology, Endocrinology, Palliative Care Medicine, Rehabilitation, Renal, Anaesthetics and Clinical Psychology.

Detailed reports of evidence reviewed and the consensus building process were produced following each workshop and condensed into this final document which was approved by all members of the Adult North Star Network including service users. The aim of this document is to provide a framework to improve clinical services and multi-disciplinary care for adults living with Duchenne Muscular Dystrophy.

A message from Pope Francis for World Duchenne Awareness Day

The World Duchenne Awareness Day 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 WDO Board member and president of ADM Argentina Santiago Ordóñez for this opportunity.

Translation:

I send warm greetings on this new World Duchenne Awareness Day. Adding myself to the hope of a better future for all people affected with this disease.

I pray for all of you and, please, I ask you to do it for me as well.

Fraternally,
Francis

#SPREADTHEWORD for World Duchenne Awareness Day

Today, the official World Duchenne Awareness Day 2021 promo video is launched. This video marks the start of the global awareness raising day on September 7. With the help of many patient organizations throughout the world, the promo video is available in 16 languages. The video shows various portraits of people living with Duchenne in daily life.

Produced by the World Duchenne Organization

The official promo video is initiated and produced by the World Duchenne Organization, and coordinated by Nicoletta Madia. “Words are important. Words can help make a difference. This is the theme that emerges from the video for World Duchenne Awareness Day 2021. The video shows various portraits of people living with Duchenne in daily life. Three words are highlighted that mean a lot to people living with Duchenne MD.”

Duchenne encompasses what it means to live with this pathology and the commitment of research and clinic in this field.

Community includes thousands of people globally committed to changing the quality of life of people living with this disease.

Awareness encompasses the importance of informing about this rare condition globally by reaching the greatest number of people. An objective that is at the center of this day and for which the World Duchenne Organization asks everyone to spread the word.

Raising awareness

The official hashtag for the awareness raising campaign is #spreadtheword. Everyone is encouraged to share this video with their friends and family to raise awareness for Duchenne and Becker muscular dystrophy.

How to share

Nicoletta: “In the previous years, the promo video was displayed on enormous billboards, many social media channels, and screens in hospitals and clinics. Our aim is to achieve this type of global coverage again, so we can truly make an impact. With the connected community we have right now, I’m positive that this will happen.”

For press inquiries, please contact [email protected]

Online event on Adult Life & Duchenne

The World Duchenne Organization is organizing an online educational event on Adult Life & Duchenne. The free event on September 7 will be accessible for everybody via Zoom, and is available with live Spanish interpretation.

On September 7, the World Duchenne Organization is organizing a live event from 14:00 to 16:00 Central European Summer Time. During these 2 hours, various experts will share their experience and knowledge on adult life with Duchenne. Speakers include Prof. Ros Quinlivan, Dr. Jos Hendriksen, Nicoletta Madia, Elizabeth Vroom and Hlawulani Mkhabela. Apart from these, Duchenne adults from different parts of the world will share their experience of living with Duchenne.

Register here for the ‘Adult Life & Duchenne’ Conference

Adult men living with Duchenne

The number of adult men living with Duchenne Muscular Dystrophy (DMD) 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.

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.

Optimal care

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, we ask you to act and start or accelerate activities to provide appropriate support and improve accessibility. By doing so, 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.” – says Elizabeth Vroom, chair of the World Duchenne Organization.

Simultaneous interpretation

The event will be held in English with an option for simultaneous interpretation into Spanish and Ukrainian. The online event will be accessible to everyone who registered. The event will be recorded and the video subsequently made available.

Apart from being of interest to caregivers and people living with Duchenne MD, the event will be of particular interest to clinicians and other healthcare professionals, employers interested to hire people living with a disability, and government institutions.

Illuminate a landmark

Illuminate a landmark for World Duchenne Awareness Day. Show your solidarity and join patient organizations in creating a wave of red light around the world. As the evening sets in on September 7, famous monuments and landmarks will be shining bright to show solidarity for the Duchenne and Becker community. Join the global movement and light up a famous landmark or monument for World Duchenne Awareness Day!

The color red

Usually, the color red is used to create the association with World Duchenne Awareness Day. In other cases, the organization was showing the logo and the signature red balloon. Next to many city halls, important landmarks were participating. 

Illuminate a monument or landmark

Which monument or landmark do you want to illuminate for this year’s World Duchenne Awareness Day? Here we are sharing success stories and guidance on how you can make this happen.

5 steps:

  1. Check the city website for procedures (office that is in charge of this activity, documents needed, timing).
  2. As soon as you have the details from your city, contact our team and you will receive all the documents and high-resolution logos needed.
  3. Create a local communication plan to share this important action and our team will help you for the international communication.
  4. Launch your event, enjoy the light and take pictures for your memories and communication!
  5. Post your pictures on your website and social media platforms mentioning @duchenneday or #WDAD2022 to share your experience with the Duchenne community.

Inspiration

  1. The Colosseum in Rome, Italy became the center piece of World Duchenne Awareness Day in Italy due to enlightening the century-old monument with the logo. Duchenne Parent Project Italy did a wonderful job!
  2. The Sagrada Família Nativity façade was illuminated in red for World Duchenne Awareness Day, with great work of Duchenne Spain.
  3. The Canadian part of the Niagara Falls was covered in a red robe to support World Duchenne Awareness Day, thanks to Defeat Duchenne Canada.
  4. In Chile, the municipality building in Santiago was illuminated in red as both DSG Duchenne and Duchenne Chile joined hands to reach out to the city mayor.

2021: Adult Life & Duchenne

WORLD DUCHENNE AWARENESS DAY 2021

September 7 is World Duchenne Awareness Day. On this day we raise awareness for Duchenne and Becker muscular dystrophy around the globe. As every year, we have a special theme that deserves more attention. This year that will be ‘Adult Life & Duchenne’. An online event accessible to everybody was taking place on September 7.

ADULT LIFE & DUCHENNE

Over the past decades, life expectancy of individuals affected by Duchenne MD has increased significantly, and adults with Duchenne are not an exception anymore. Adult life with Duchenne comes with new challenges and opportunities as well as with new medical issues. This World Duchenne Awareness Day, we are globally advocating to create opportunities for young adults and adults with Duchenne to live their lives to the fullest.

WORLD DUCHENNE ORGANIZATION

On September 7, the World Duchenne Organization will be hosting an online event. During this event, experts share their stories and experiences surrounding DMD/BMD and adult life. With this, we aim to inspire and empower young adults with Duchenne and their families to think and plan for the future.

PRESS RELEASE

Click the picture below to see the official World Duchenne Awareness Day 2021 press release. The press release is available in Arabic, Bulgarian, Dutch, Finnish, Greek, Spanish, Polish, Russian, Ukrainian and Vietnamese.

Visit the ‘Download Materials‘ page for more information, visuals and materials to raise awareness.

For inquiries, please contact Suzie-Ann Bakker

World Duchenne Awareness Day 2020 recap

Monday September 7 marked the 6th edition of World Duchenne Awareness Day. This international day dedicated to raise awareness about Duchenne and Becker muscular dystrophy (DMD & BMD) continues to grow since its launch in 2014. Many events were organized and over 50 countries participated in the awareness effort.

WDAD in numbers

Duchenne and the brain

This year’s educational theme focuses on brain involvement in DMD and BMD, a previously overlooked area. The online program ‘Duchenne and the Brain’ where researchers, clinicians and families shared their experience on brain involvement in DMD/BMD collected over 2K views in the first week already. Subtitles are available in Spanish and Dutch, and the community is working on subtitles in German, French, Ukrainian and Russian.

Did you host or attend an activity or event? Please send us your pictures, video or press clippings!

ENMC workshop report: Brain dystrophin in muscular dystrophy

Thanks to the European NeuroMuscular Centre, last November a workshop on the role of brain dystrophin in muscular dystrophy; Implications for clinical care and translational research took place. The ENMC kindly gave the World Duchenne Organization permission to publish the lay report of this meeting on the WDAD website.

The workshop report of the 249th ENMC workshop on brain dystrophin is now online as journal pre-proof. The DOI of the article is: 10.1016/j.nmd.2020.08.357.

Click here to read the full lay report (English)

This lay report is currently translated into several languages including German, French, Italian, Danish and Dutch. We generously thank the ENMC for hosting this workshop and the translators of the report: Prof U Schara, Dr C. Vaillend, Prof. A. Ferlini, Prof J. Vissing, Dr M. van Putten and Dr N. Doorenweerd for their general contribution to making information more accessible to the global muscular dystrophy community.

The European Neuromuscular Centre (ENMC) was founded in 1992 by a group of European patient associations that dedicated itself to bring leading researchers and clinicians from all over the world together. To achieve this goal, ENMC applies a concept unique in the scientific world, which consists of organising and financing workshops on application basis. Topics of the workshops vary from outcome measures, clinical trial readiness and preclinical studies, to diagnosis and care for neuromuscular diseases.

Join the online program on Duchenne and the Brain

On September 7, we are launching a live online program for everyone interested in Duchenne care and research. Experts are sharing their experience and knowledge about Duchenne and Becker in relation to the brain. The full program can be found below. The livestream is available with Spanish subtitles.

Details

Date: Monday September 7

Time: 9am EDT, 2pm GMT, 3pm CEST

Link: https://youtu.be/yuB_87NoxGU

Add invitation to calendar

The two-hour online program will be a livestream starting Monday September 7 3pm CEST. WDO Chair Elizabeth Vroom invites Prof. Mercuri, Dr. Doorenweerd, Dr. Hendriksen, Kathi Kinnett, and Prof. Muntoni to share their expertise and experience on Duchenne and Becker in relation to the brain. Next to experts in the field of DMD and BMD, we have parents explaining the impact of having a child with DMD/BMD who is experiencing learning difficulties and/or behavior problems.

Speakers

Prof. Eugenio Mercuri, pediatric neurologist Policlinico Gemelli, Rome

As a pediatric neurologist specialized in neuromuscular diseases, professor Mercuri’s areas of interest include neonatal neurology and the clinical and molecular aspects of childhood neuromuscular diseases. He will share his experience and perspective as a clinician about the impact of brain involvement in DMD/BMD.

François Lamy, DMD father from France 

Father of 2 children, one of them is Luka who was diagnosed with Duchenne at an early age when he already showed differences in communicative skills. Francois explains what help they needed since then to support Luka with his behavior and learning skills.

Dr. Nathalie Doorenweerd, researcher LUMC and University of Newcastle (UK)

Most families know that the fact dystrophin is missing in the brain of individuals with Duchenne is causing problems. Dr. Doorenweerd’s research is looking into the changes in the brain and brain tissue in absence of dystrophin. She’s using techniques like MRI to measure metrics such as brain volume, and perfusion (how much blood flows through the brain) in boys with DMD and BMD.

Martha Stein Carotta Henriques, DMD mother from Brazil 

Martha’s son with Duchenne muscular dystrophy was diagnosed very late. Martha will tell about their journey and explains what it means for a boy not to be understood by the outside world. 

Dr. Jos Hendriksen, neuropsychologist Kempenhaeghe (NL)

Dr. Hendriksen is a pioneer and one of the most experienced clinical neuropsychologists  in the field of DMD/BMD and brain involvement. For about 25 years he has been working on the subject which is the theme of this year’s WDAD. He is also the author of the handbook Neuropsychology of Duchenne, which is translated in 6 languages. He will present the different kinds of behavioural and learning issues we see in people with DMD/BMD, and how we can help them with the knowledge of today. Next to this he also pleas for standardization and dissemination of knowledge on this topic.

Kathi Kinnett, clinical care advisor PPMD (USA)

With a longstanding involvement in clinical care at PPMD USA and crowned godmother of Duchenne family guide, Kathi Kinnett is an expert in bringing people together to reach consensus on care and in translating these scientific guidelines to families. Kathi will talk about what she hears from families and what is needed to improve care regarding learning and behavioral issues. 

Prof. Francesco Muntoni, pediatric neurologist GOSH, London (UK)

Professor Muntoni is pediatric neurologist and director of a leading clinical and research institution for children affected by a neuromuscular disorder. He is one of the leading clinicians and researchers in DMD and BMD in the world and is also involved in the development of new treatments for DMD. He will share his experience as clinician, researcher and as the leader of the BIND consortium. He will explain what are the next steps in order to improve the understanding of Brain involvement in Dystrophinopathies (Duchenne and Becker)

Elizabeth Vroom, chair World Duchenne Organization (NL)

Mother of a son with Duchenne muscular dystrophy. She has a longstanding interest in improving Duchenne care including earlier diagnosis, early screening for neuropsychological issues and adequate support and treatment for those affected.