WDO welcomes 44th member patient organization: DMD Aileleri
DMD Aileleri Derneği (meaning DMD Families Association in Turkish) started Turkey by families whose children are diagnosed with Duchenne and Becker Muscular Dystrophy. The combined shape of DNA chain and sandglass in the organization’s logo represents the race against time on this genetic disease. They have a clear vision: “Improve the standards of living for all DMD/BMD patients and ensure access to approved treatments without any delay.”
Their fight to end Duchenne is progressing by informing families to provide optimal patient care, by raising social awareness and by striving to prepare the health infrastructure for emerging treatments.
The organization’s eldest board member Mehtap Yüksel, who is mother of Ayberk (23) is more hopeful than ever. “It has been eighteen years since my son was diagnosed with DMD at the age of 5. During this time, I met many families also affected by Duchenne and learnt that those who hope have the power to make changes. We are together in this organization because we are more hopeful and stronger together.”
Raising awareness
In order to raise social awareness, posters to promote DMD are displayed on billboards and LED screens in the ten largest cities of Turkey. Informative public spots are currently broadcasted on national channels.
The organization believes in the power and influence of social media. A fresh example is the campaign #shoesforDMD which spread on Twitter by the participation of famous football clubs of Europe as Atletico Madrid, Sevilla, AS Roma, Schalke 04, FC Twente, Galatasaray.
Educating clinicians and families
Next to this, DMD Aileleri has a scientific advisory board which is led by neurologists, cardiologists, pulmonologists, psychologists, physiotherapists, dietitians and more experts who have studied deeply on Duchenne. Video conferences are regularly organized and have an important impact on educating both the clinicians as well as the families.
DMD Aileleri facilitated the opening of centers specially designed for neuromuscular conditions. There are currently thirteen neuromuscular disease centers operating in Turkey. These better equipped centers create a suitable environment to participate in clinical trials.
Connecting to the global community
Taylan Çakır is vice chairman of the board and father of a 7-year-old boy with Becker MD. “As a family organization, we have made remarkable progress for raising public awareness, informing families about healthcare and accessing formal authorities to receive social insurance support about treatments.
The World Duchenne Organization has large experience and is a unique source of knowledge that is leading us to explore different ways to fight Duchenne. We are very excited for our first participation to Duchenne Patient Academy at the end of this year. We feel it will be a great opportunity to connect to global Duchenne community.”
