United Parent Projects Muscular Dystrophy (UPPMD), an organisation owned and managed by Parents of children with Duchenne Muscular Dystrophy (DMD), in collaboration with HealthCare Global Enterprises Ltd (HCG) and NIMHANS, is holding a conference as part of its attempt to change the future for Duchenne boys in the Asian region. In this connection, the first Asian conference on DMD would be held in Bangalore, India, on February 28 and March 1, 2009.
The key objective of the event is to empower and inform parents and physicians about diagnostics, research and clinical trials related to DMD and Becker Muscular Dystrophy (BMD). Parents will have the opportunity to meet and listen to researchers, physicians and experts in the field from all over the world about advances made in improving the care for DMD. Also the parents will learn the importance of working together with Duchenne families from around the world by becoming a part of the Global Duchenne Community. This conference will also focus on rehabilitation and care of DMD children.
According to Dr Ajai Kumar, chairman, HCG, and a parent of DMD, "It is imperative for parents of children suffering from DMD & BMD to have contemporary information on these diseases. This not only ensures that the children suffering from these diseases get the best practices of the best clinicians globally but also helps to promote good standards of care."
Further, one in 3,500 boys worldwide, which is an estimated 20,000 babies are annually afflicted by DMD. Also since there is no cure and the fact that it can happen in any family across all ethnic and social groups means more awareness needs to be created. With Government not taking enough initiative to find a cure for this dreaded disease, the onus is on the private sector to find appropriate cure with parents championing the cause and pushing the agenda. In fact in the US and Europe parents movement has triggered a mini revolution for the cause of DMD, he added.
DMD is the most common childhood form of muscular dystrophy affecting male children only. DMD usually becomes clinically evident when a child begins walking. Patients typically require a wheelchair by age 10 to 12 and die in their late teens or early 20s. Life expectancy for Duchenne has barely improved. The simplest of tasks, such as holding a fork or turning over in bed, becomes very difficult. In the later stages, heart and respiratory muscles begin to fail. The gene mutation that causes Duchenne is usually passed from mother to son, but fully one-third of cases are spontaneous.
United Parent Projects Muscular Dystrophy (UPPMD) is owned and managed by parent project organizations set up by parents of children with Duchenne Muscular Dystrophy in many countries all over the world.
HCG is South Asia's largest cancer care network which currently manages a network of 15 functioning centres across India. Though HCG focuses on Cancer Treatment Centres, Imaging & Laboratory Services and Clinical Trials & Research Services, it also aims to be a leader in regenerative medicine and stem cell research for betterment of children suffering from DMD and other congenital diseases.