December 8th,9th -2018
Myocon 2018 - 4th biannual conference organized by Muscular Dystrophy Association India happened at the Tamilnadu Government Multi Super specialty Hospital, Omandurar Government Estate, Annasalai, Chennai on the 8th and 9th December 2018. The conference was a big success in all fronts including the feedback from the delegates, faculty and the families who attended the conference. The event went off like clockwork with no delays and started on time on the 8th Dec at 9 am and finished on time.
Myocon 2018 Day 1- 8th Dec 2018 was targeted towards doctors. Large number of delegates (over 150) from Tamil Nadu and the other parts of the country attended the conference. The delegates included pediatricians, neurologists, physiotherapists, psychologists, physicians, post graduates in large numbers and some paramedics including nurses. The first session started on time with a brief welcome address followed by a wonderful talk on the latest hopes in the management of a person diagnosed with spinal muscular atrophy(SMA) by Prof.Renu Suthar from PGI, Chandigarh – a neuro-muscular specialist. All the recent advances in the treatment and the trials on SMA were discussed clearly. This was followed by a talk on the utility of MRI of the muscle not just as a diagnostic aid but also in follow up and in research. The next talk was delivered by Prof.U.Meenakshisundaram who is clinician par excellence and a good teacher on how to clinically differentiate various types of ptosis and come to a diagnosis. Following some discussions the second session was kick started by Prof.Khadilkar from Mumbai who spoke about his clinical experiences with the various types of LGMD. Having identified the Agarwal gene in his research he is a well known expert in this field internationally. Prof.Jayakumar a senior neurologist then enthralled the audience with his collection videos of various types of Myotonias and how to differentiate them clinically. Having collaborated with Treat NMD group, United Kingdom on congenital Myasthenia Prof.Nalini presented her experience over the years in this area and the genetic heterogeneity. This was followed by a short tea break before the inaugural session. After prayer and lighting the traditional Kuthuvilakku we had the honour of introducing MDA India and its activities over the last 18 years briefly and then the vision of what MDA wishes to pursue over the next few years including setting up the National Centre for Muscle Research and Rehabilitation (NMRRC) under one roof including the registry for neuromuscular disorders. The inaugural address was delivered by Prof.Bhaskar Ramamurthy, who is the current Director of the Indian Institute of Technology, Madras. He promised all help from IIT Madras from particularly the department of Biotechnology and the Design Engineering Department to MDA India to achieve our goal of setting up the NMRRC. The inaugural address was delivered by Prof.Vijayaraghavan who is a distinguished scientist himself but presently the principal scientific advisor to the Govt of India. He was all praise for the envisaged plans of MDA India and promised all help from his side and stressed the need for more collaboration between clinicians and scientists. The oration was the delivered by Prof.Jyotsna Dhawan on the utility of stem cells and how it can be considered to be of therapeutic potential in muscle disorders and the need for research in this field. This was followed by a lunch break and then the post graduates had their opportunity to present their original research papers as platform presentation and others as posters all of which was judged by senior neurologists and the best 2 from each category was chosen for prizes. The afternoon session had a wonderful talk on the various clinical presentations seen by Prof.Maya Thomas with Mitochondrial Myopathies. A talk on the what are the latest in terms of possible therapeutic advances in DMD was discussed following that. After a short tea break there was a talk on distal myopathies by Prof.Nair a senior neurologist with huge experience. The last talk of the day was delivered by Prof.Chikara about the advances in genetic testing in neuro-muscular disorders and how the landscape has changed over the past few years. This was followed by the closing remarks and thanks by the president of MDA India – Mr.Suresh Kumar.
Overall the conference went off well and was well appreciated by one and all for the scientific content and spread from basic sciences to therapeutic potential and its clinical applications / evaluations.
This session was a separate session for parents with all the national and international faculties as they are the ones who are very keen to know about what is the latest in terms of helping their child. There was also a workshop for the families on how to handle a child with muscle disorder and what best they can do for their child.
Around 150 families from all over India, predominantly from South India registered from the conference. The sessions started with an overview of what are the common neuromuscular disorders including Duchenne Muscular Dystrophy and Spinal Muscular Atrophy. This was followed a brief description of the various stages of the disease and the diagnostic algorhythm so that the families are familiar with what is the basic diagnostic criteria. Details of family screening and prenatal diagnosis was explained to the families by Dr,V.Viswanathan (Pediatric neurologist). Then there was a basic demonstration of what is the role of physiotherapy and the common methods, techniques and devices that may be of value to these children – including the Ankle foot orthoses, cough assist device, single valve ambu bag etc that are needed clearly explained and demonstrated to the families by our physiotherapist – Mr.Suresh Kumar.
This session was followed by an open question answer session where the families were allowed to ask / clarify any doubts that they may have about their child. The faculty on stage included dietician, physiotherapists, paediatric neurologists, neuromuscular specialists and physiotherapists. There were a lot of questions about diet and how to prevent excess weight gain which was tackled well by our dietician Mrs.Nandini and clarified in details. Some of the families had questions / concerns about genetic testing including carrier testing and prenatal testing and were clarified by our neurology experts on the stage very well. Questions about what is the hope for the future and what are the ongoing clinical trials were anticipated and so was explained with a power point presentation about the same. The Role of assistive devices and the lack of barrier free access at schools/ colleges and public places was a big concern for many of the families. On behalf of MDA India it was explained that we were looking at collaborative projects on low cost assistive devises technology and all the foundations for the same have been laid already. The families also were also explained the actions taken by MDA India with the department of the differently abled, Government of India and what the next steps are. The session was very intense and emotionally charged due the understandable anxiety of the families for an early cure. The families were briefed about the activities of MDA India in this regards including the ongoing Translarna studies along with PTC 124 and the other efforts that are ongoing. This was followed by a lunch for all.
On the whole it was a very satisfying day for all as it helped to clarify a number of common queries that the families had and helped to give them some hope for the future.
'Happiness is contagious. By giving, we receive'
These are words of belief, relied on by our Muscular Dystrophy Association India. Planted in early 2000, we have blossomed comfort for a large cohort of Muscular Dystrophy community. And of course we have diagnosis and researches done to ease the hold of the disease. With able support from more like minds, things would prove ever positive.
Neither so early, nor late as well, the Muscular Dystrophy Association India is one of the very few of its kind in India. Since its first breath on the 5th of February 2000, the association has itself programmed with the duty to help those afflicted by the disease – MUSCULAR DYSTROPHY.
When the idea of such an association was kindled by Dr. Gunter Schuebraundt on his visit to India, it was Dr. V. Viswanathan, Paediatric Neurologist from KKCTH1, Chennai, Dr. Kalpana Gowrishankar, Geneticist, KKCTH, Mr. Ganapathi and Ms. Kavitha, KKCTH, Mr. V. R. Anil Kumar, Rotary Club (Madras South) and few other personalities with similar frequencies to venture into the thought and realizing what was just an Association all but just in mind.
With the case statistics increasing every now and then, the growing importance on our organization have led us to where we are now. The support group consists of the Patients, Parents, Doctors, Scientists, Volunteers and all of those interested in alleviating the status quo of the situation and who can positively contribute to the affected.
After six long years of experience, involvements and a shift of the Association from its initial base at KKTCH to SMF2, Chennai, in the midway, we have managed to establish a large cohort of Patients, Parents, Volunteers and like minds from all over South India. All of the patients who have registered with us have been examined in detail and investigated on biochemical and genetic aspect and diagnostic label established
Our efforts haven’t stopped with helping the parents and children.The biggest advantage would be meeting the challenges and sharing across culture and borders. We are actively linked with International bodies working to find a cure for the disease. We are one of the chosen centres for the Global programme on Duchenne Muscular Dystrophy called the CINRG3.
We need to thank Mr.Balakrishnan, Mr.Thirukumaran, Mr.Ashok Kumar and other members of our MDA who have been working relentlessly for the welfare of the association. Moreso important is that they are the Parents of the affected children with Duchene Muscular Dystrophy. Also, Actor/Politician, Mr.Napolean has supported our MDA India strongly and helped us with personal financial contributions and also helped us procure Drug Import License from the Central agencies. We are clearly indebted to him and his family for all the support.
And in our quest, ONGC, India came forward on our request to sponsor this very thing which you are witnessing on your Desktop. Yes, this website was sponsored by ONGC, India. We are grateful to them for the same.
Our basic objectives include,
Our activities till day include,
Muscular Dystrophy Association India
Research Center for Genetic Medicine at the Children's National Medical Center (CNMC)
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