Who Are We ?
Molecular Diagnostics Counseling Care and Research Centre (MDCRC) is a not for profit NGO working on Neuro Muscular genetic disorders viz. Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA). This organisation was started with an aim to give holistic services to male kids affected with DMD and SMA. Till this point in history, we do not have a proven cure for the above disorders. MDCRC focuses on helping these special children live a beautiful life as their life span is short (about 25 yrs.) due to unavailability of proven treatment remedies.
We started off as Molecular Diagnostic Facility (MDF) supported by Stitching Porticus, a Dutch grant, coordinated through Sundaram Medical Foundation, Chennai in 2006. MDF’s initial focus was on Molecular Diagnostics for Duchenne Muscular Dystrophy (DMD). MDF soon became a state of the art facility which provided free services in a professional manner. The diagnostic services expanded from simple multiplex PCR (Polymerase Chain Reaction) to advanced technique, MLPA (Multiplex Ligation Probe Amplification). Though, our initial venture was to perform only molecular diagnostic services, our close interaction with the affected children and their families showed that our responsibilities do not end there. So, we started genetic counseling services and by the year 2008, we were the only centre in Tamil Nadu to offer genetic counseling for DMD patients. Carrier analysis is also done in families with Duchenne kids to prevent the disease passing onto the next generation. A well organised DNA bank is established for future research
In August 2009, at the closure of the Dutch grant, our commitment to serve the affected children and their families was stronger than ever. We also felt the need to create awareness and sensitize students, the torch bearers of the future generation on public health issues. We prospected new avenues to combine both our commitment and our beliefs in to our future goals.
Dr. B.R. Lakshmi, our founder, is an alumnus of Avinashilingam University. She believed in the ideals of Dr. Avinashilingam, the founder of the institution, of taking science to the community. Our identical ideals led us to associate with Avinashilingam University as an alumni initiative. After its association with Avinashilingam University, MDF metamorphosed into an organization with a holistic approach to identify, prevent, treat and manage the disorder. To better reflect this all-inclusive approach, MDF became “Molecular Diagnostics, Counseling, Care and Research Centre” (MDCRC). From September 2011, MDCRC has become an independent, not-for-profit charitable organization, which started its work focusing on Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA).
Since there is no cure, providing multidisciplinary care is the only way to manage the disorders to ensure a good quality of life for the affected children. Families are aware of the lethal nature of the disorder. They need someone to hold hands and guide them towards the appropriate care for their children, until some therapy is identified. To satisfy this requirement, MDCRC has initiated multidisciplinary care clinics for the patients with DMD as per international guidelines. These multidisciplinary care clinics involve guidance from clinicians across various disciplines such as Pediatrics, Neurology, Orthopedics, Physiotherapy, Rehabilitation, Pulmonology and Cardiology. MDCRC facilitates multidisciplinary care to the affected children by organizing them with the help of a committed panel of clinicians. Apart from regular diagnosis, counseling and care, we also conduct outreach programs in the rural areas viz., Information, Education, Communication (IEC) activities towards awareness of these disorders. MDCRC also organizes training programs for the staff of health departments and screening camps for children with the help of the public health system.
All these activities provide a sound platform for creating a registry. Registries will pave the way to better understand about the prevalence of the disorders amongst our population. It also enables the Government bodies to allocate appropriate resources and funds through policy makers, dissemination of updates on standards of care, facilitate networking of clinicians and researchers with upcoming research programs and therapies in the pipeline. As part of our family support services, we conduct fun-weekend programs for the affected children and their families annually. We mobilize support to donate wheelchairs or assistive devices, giving them solace and support to combat these lethal genetic disorders. Thus, all services of MDCRC are comprehensive/holistic in nature. They are offered free of cost to the patients.