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

2020: Duchenne and the Brain

DUCHENNE AND THE BRAIN

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 Duchenne and the brain.

Online conference on Duchenne and the Brain

On September 7, the World Duchenne Organization is hosting a livestream where experts share their knowledge on DMD/BMD and the brain. The livestream is available as recording afterwards. This online event is for clinicians, researchers, families and teachers. We can all learn something from this important aspect in Duchenne and Becker MD.

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This conference has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 847826 – BIND project

Program

In the two-hour livestream, experts will provide their expertise in the field of DMD/BMD. Next to this we have parents explaining the impact of having a child with DMD/BMD who is experiencing learning difficulties and/or behavior problems. 

Click here to see the program (pdf).

The same protein that is missing in the muscle causing muscle breakdown, is also missing in the brain. This is causing problems such as learning difficulties or behavioural issues such as ADD, ADHD, OCD and autism. For many families in day to day life, this is causing more stress and worries than the physical problems. The World Duchenne Organization identified this need and is currently participating in the BIND project under European Union’s Horizon 2020 research and innovation program under grant agreement no 847826. 

Speakers

  • Prof. Eugenio Mercuri, pediatric neurologist Policlinico Gemelli, Italy
  • François Lamy, DMD father, France
  • Dr. Nathalie Doorenweerd, researcher LUMC and University of Newcastle, UK
  • Martha Stein Carotta Henriques, DMD mother, Brazil
  • Dr. Jos Hendriksen, neuropsychologist Kempenhaeghe, NL
  • Kathi Kinnett, clinical care advisor PPMD, USA
  • Prof. Francesco Muntoni, pediatric neurologist GOSH London, UK
  • Elizabeth Vroom, chair World Duchenne Organization, NL