The second World Duchenne Awareness Day is set to take place on Monday, September 7, and is being marked at the offices of Greece’s Muscular Dystrophy Association (MDA Hellas) in Victoria Square, downtown Athens. The event, organized by parent and patient associations, aims to spread awareness about this devastating form of muscular dystrophy.
Duchenne muscular dystrophy (DMD) is one of the most common fatal genetic disorders, which affects on average one in every 3,500 newborn boys worldwide. It is caused by errors in the dystrophin gene, the longest gene in the human body. Boys with DMD gradually lose mobility and are wheelchair-bound by the age of 12. In the next period it destroys breathing and heart muscles. The condition carries a life expectancy of 25-30 years and has no current cure.
To mark the day, 500 red balloons will be released after 7 p.m. to represent the 500 boys and men currently living with DMD in Greece.
An experimental drug which has been found to delay symptoms for specific deletions is being provided to seven eligible boys in Greece. After a campaign by Parents Project MDA Hellas, the drug was made available in Greece at a cost of 250,000 euros per child per year, which is being covered by the National Organization for Healthcare Provision (EOPYY) via the Institute for Pharmaceutical Research and Technology (IFET). Spain and Italy’s healthcare systems are also funding the drug in their countries. The United Kingdom’s NHS has yet to discuss providing the drug.
Parent and patient associations in Greece have also been campaigning for all boys diagnosed with DMD to receive an automatic 67 percent disability rating at the Disability Certification Center (KEPA) to ease the financial burden families face.
“It has taken a lot of work with very limited resources, budget cuts and delays to achieve what we have achieved so far. Time is not on our side so we need to work hard every day till a cure has been found,” said Dimitris Athanasiou, head of Parents Project MDA Hellas and the father of a 4-year-old boy with DMD.
“This is a disease that progresses very fast, so there is not a moment to lose for us. We are waiting for the outcome of the new round of elections and look forward to the cooperation of the country’s new health minister in continuing our work of trying to save our children.”