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.

Online program for brain involvement in Duchenne and Becker muscular dystrophy

An online program about brain involvement in Duchenne and Becker muscular dystrophy will launch on World Duchenne Awareness Day. This initiative is organized by the World Duchenne Organization and will take place on September 7. 

The theme of this year’s World Duchenne Awareness Day is ‘Duchenne and the Brain’. Because of this, the World Duchenne Organization organizes a global livestream directed towards families, clinicians, researchers, teachers, basically everybody involved and interested in Duchenne care and research. The live stream will be launched with Spanish subtitles.

Program

  • Stories of Duchenne families dealing with the burden related to brain involvement in Duchenne;
  • Update on the current state of knowledge about the comorbidities;
  • The need for early and adequate screening and support.

About the theme

This theme was chosen to raise much needed awareness on brain comorbidities such as autism, ADD and ADHD and learning difficulties in people affected by rare disease Duchenne and Becker muscular dystrophy. This crucial aspect was already recognized when the condition was first described in 1861 by Duchenne de Boulogne. International research to create standardized assessment and treatment options is currently being worked on.

WDAD receives letter of support from Pope Francis

Just like previous years, Pope Francis is supporting the effort of World Duchenne Awareness Day to raise awareness for Duchenne and Becker muscular dystrophy. We are honored and grateful for Pope Francis for his generous support in the global effort in creating better lives for those affected by DMD and BMD.

With the support of Mr. Santiago Ordoñez, president of ADM Argentina and WDO Board Member, we have received the following message from Pope Francis:

“I join this new World Duchenne Awareness Day, I send my warm regards joining in the hope of a better future for all. I pray for you all and, please, I also ask you to do it for me.

Fraternally,

Francisco”

 

Official WDAD 2020 promo video launched

The Covid-19 pandemic has a strong impact on the life of every single individual and family, modifying our time and habits. This experience that the entire world is living shows how we can be stronger only when we are together. This is the message that the World Duchenne Organization is launching for the World Duchenne Day on September 7.

We can be stronger only together during a global pandemic. But we can be stronger together every day even when the emergency will finish. Because our cause will still be there, our engagement will still be there and we need every single person to be involved.

The video is directed by Nicoletta Madia and produced by Arimvideo Srl. World Duchenne Organization is the owner: all rights reserved.

World Duchenne Organization thanks the Italian and Greek Duchenne families who participated in the video, Centro Clinico NeMO and Fondazione Policlinico Universitario Agostino Gemelli IRCCS for the support with the logistics.

In 60 days, World Duchenne Awareness Day will be celebrated!

The Covid-19 pandemic is having a strong impact on the life of every single individual and family, modifying our time and habits. It changed our daily life globally but it cannot delete our projects and our voice.

We as Duchenne Community know very well what it means to live in moments of isolation, to face emergencies, to adapt our daily lives to clinical care. We know the meaning of specific words like ‘fear’, ‘pain’, ‘distance’ but at the same time we are trying to turn ‘fear’ into ‘hope’, ‘pain’ into ‘resilience’ and ‘distance’ into ‘closeness’.

For this reason, we have decided to share an important message globally linked to the general awareness of WDAD2020, a message that many people have experienced and are still experiencing this year: together we are stronger.

We can be stronger only together during a global pandemic. But we can be stronger together every day even when the emergency will finish. Because our cause will still be there, our engagement will still be there and we need every single person to be involved.

So, let’s raise our voice and work on the general awareness of WDAD2020. With our strength and creativity, let’s make a difference! What can we do? Let’s start in 5 simple steps! 

1. Promote the new WDAD2020 video

The promo video last year was very useful to raise awareness of WDAD. We are working on the creation of a new one that will bring the message “Together we are stronger” with realistic moments lived by our families.

The video will be launched on August 24 and will be translated in several languages. Nicoletta Madia is sharing the text to be translated and is in charge on the creation and dissemination of this video. For info, do not hesitate to contact her by writing at [email protected].

2. Illuminate your cities

Contact your local institutions to illuminate your monuments in red! This action is very simple to share the message in a simple way. If you need some examples on how to ask for this please have a look at How to light up a monument in your city or contact us.

3. Contact your local media

Together with the promo video, a press kit will be available soon so you can contact your local media to promote WDAD2020.

4. Promote digital action

Create a digital action for WDAD2020 to raise awareness of the day involving a large audience. Some ideas? You can organize a web press conference, live streaming presenting WDAD on your social media, or local fundraising digital activities.

We will be happy to share your photos and information about the activities you organise for WDAD2020. Please, tag your social media efforts with #WDAD2020 or send your materials to our coordinators Nicoletta Madia and Suzie-Ann Bakker at [email protected].

5. Digital balloons

The red balloon is still a symbol of WDAD2020. But is important, due to the respect of the environment, to release virtual balloons. For this reason, we will ask to all the communities of the world to post the red balloon on a specific time on September 7: this will be a global digital launch!

For questions and ideas regarding the general awareness of WDAD2020, please contact Nicoletta Madia at [email protected] and Suzie-Ann Bakker at [email protected]

We really count on you to make OUR day a GREAT day!

WDAD receives high patronage of the European Parliament

World Duchenne Awareness Day 2019 will be celebrated under the High Patronage of the European Parliament

It is estimated that today in the EU, 5-8000 distinct rare diseases affect 6-8% of the population – between 27 and 36 million people.

 

The EU’s strategic objective for rare diseases is to improve patient access to diagnosis, information and care. It assists in pooling scarce resources spread across the EU, enabling patients and professionals to share expertise and information. Specific measures include:

As an international Duchenne Communitywe are very grateful to the European Parliament for this important recognition and the effort in fighting rare diseases.

How you can bring your light to Duchenne families

With World Duchenne Awareness Day approaching, there are so many ways you can get involved in raising awareness on this rare muscle condition. No matter what effort you make, your contribution to raising awareness will help lift off Duchenne Muscular Dystrophy from this world. Here are some tips on how you can bring your light for World Duchenne Awareness Day.

  1. Talk. Use this day to bring up topics or questions you have to open up conversation with family, friends or anyone about Duchenne. This can involve this year’s topic ‘Nutrition & Nutriceuticals in DMD’, but can cover anything that is on your mind. 
  2. Listen. Some Duchenne parents or families don’t want to hear solutions, they just want to be understood. Allow yourself to become a listener and focus on creating mutual understanding to set the path towards meaningful problem solving. 
  3. Learn. Attend a conference, event or fundraiser nearby and support your local Duchenne organisation. This not only brings you fresh knowledge and insights, but also creates a stronger bond with other Duchenne families. 
  4. Donate. Reach out to your patient organisation and ask how you can help. Donate your time, expertise or money and help create a better quality of life for those affected by Duchenne Muscular Dystrophy.
  5. Show. Demonstrate your solidarity with the Duchenne community by taking a picture with a red balloon, and post it on social media with the hashtag #WDAD2019, mentioning @duchenneday.

With these steps in mind, we can build together on a future with better standards of care and quality of life by those affected by Duchenne Muscular Dystrophy. On September 7, let’s hear it for Duchenne and Becker boys, men, girls, carriers, and anyone who is affected by this muscle condition.

World Duchenne Awareness Day 2017 in Mexico