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.
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.
The online conference is also available with Arabic subtitles:
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.
- 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