Society for Regenerative Medicine and Tissue Engineering (SRMTE) in collaboration with Muscular Dystrophy Foundation India (MDF INDIA) as the knowledge partner has organized an international conference on, “Biotechnology-focusing on latest trends in Stem cells, Regenerative medicine and Tissue Engineering”. The conference held at Club Patio, Gurgaon during 31.01.11 and 01.02.11. Renowned Scientists from the US, Singapore, Malaysia, Ukraine and many other countries and leading biotechnology research institutions took active part in this conference.

Mr. M. Louis, Executive Director of Muscular Dystrophy Foundation India was the only non-technical speaker in this conference. He represented the voices of muscular dystrophy community in this country. His speech was very much appreciated by the scientists and top brace government officials present in the workshop.  He advocated for pro-poor services and products and specifically demanded for strict monitoring and regulating mechanisms by the government.

Muscular Dystrophy Foundation India has also organized a stall in the STEM 2011 exhibition.

(Speech by Mr. M. Louis)


Training on Right to Education – Awareness & monitoring

Muscular Dystrophy Foundation India joins hands with Institute of Human Rights Education and few other organizations in organizing a UNICEF sponsored training program on ‘Right to Education Act’.
The two days training would focus on,

  • Imparting knowledge about the provisions and special features of the RTE Act
  • Mechanisms of monitoring the implementation of the Act
  • Generating public awareness on the RTE Act

The training has been scheduled to be held on 18-19 August at Hotel Royal Court, West Veli Street, Opposite to Madurai Railway junction, Madurai – 625001.

Interested persons from NGOs, Teachers, senior students, Trade Unionists, Rights Activists, movements, community based organizations and socially concerned individuals are most welcome to use this opportunity. Participants will be reimbursed of their travel expenses on production of original tickets by train/bus. Accommodation could be arranged only for outstation candidates on prior request.  

For further details and confirmation of your participation, please write to, or contact Ms. Asha at 9790040124 / Mr. Chellapandi at 9994368534 / Mr. Satish Raj Kumar at 99444 68512


‘Muscle News’ – Launch of the first ever news letter in Tamil about Muscular Dystrophy
It is a known fact that India has hardly any information/ documents on Muscular Dystrophy. Secondary sources, particularly the internet being the major source of information, the rural poor and the illiterates have been severely constrained to have timely and adequate information. Often the medical fraternity could not even offer the much required information resulting in the parents running from pillar to post. It is the situation that mdfindia has intended to change by publishing a quarterly news letter in Tamil, titled, “Muscle News”. Needless to say, it would be the first of its kind effort in the state.
‘Muscle News’ is scheduled to be launched on 14.8.2010 at Madurai by
Shri. P. Balasubramanian, IPS, The Commissioner of Police, Madurai. The first copy of it will be received by Shri. Lion. VR. Chinna Arunasalam, District Governor, Lions District – 324 B3.


Is Stem Cell Therapy a Cure to Muscular Dystrophy? – an interactive workshop at Madurai on 14.8.2010
Stem Cell Therapy has been a hot topic in recent times amongst the parents of Duchene Muscular Dystrophy. There have been an increasing number of parents subjecting their children for stem cell therapy without even being sure of the results and despite the huge sum of money required. Also, there have been an equally increasing number of institutions world wide and in India, trying to attract patients. It remains a question as to how many such institutions in India really adhere to the guidelines provided by the Indian Council of Medical Research (ICMR).
Having rightly understood the anxieties, helplessness and lack knowledge of parents, mdfindia has decided to create an opportunity for parents to gain thorough understanding and knowledge about stem cell therapy by directly interacting with the providers of stem cell therapy.
In this context, Dr. Gururaj A.Rao, Research Director of International Stem Cell therapy Services Limited (ISSL) has consented to be available at Madurai for a direct interaction with the parents on 14.8.2010. ISSL has been a much reputed company and claims that it adheres to the ICMR guidelines.
Therefore, parents who are interested in knowing about stem cell therapy and requiring clarifications are welcome to participate in the workshop and seek clarifications directly from Dr. Gururaj A. Rao.

Please contact Mr. Louis at for details of registration.


‘Muscle Campaign’
For various purposes including those of experience sharing, mutual support, building local level networking capacities, voicing for inclusive policies; all leading to the launch of a state wide campaign on Muscular Dystrophy, mdfindia have started promoting district level ‘MDF Parents’ Association’ in all the districts of Tamil Nadu.  In this regard, “MDF Parents’ Association” has been formed at,

  • Madurai on 28.7.2010
  • Nagapattinam on 30.7.2010 and
  • Vellore on 07.8.2010

MDF Parents’ Association at Thirunelveli and Virudhunagar districts are scheduled to be formed on 15th August 2010.


Press meet
A press meet was organized at the mdfindia office in Madurai on 24.7.2010. Almost all the media people including the print and television media have took part.
The Executive Director of mdfindia along with a few parents have spoken to the media, their views about a recently announced scheme of the government of Tamil Nadu for Muscular Dystrophy patients.
The scheme named as, “Day care cum physiotherapy centre’ has been declared to be launched in 6 districts. A sum of Rs.8.16 lacks per centre has been allocated and applications from suitable NGOs have been already invited.
Mdfindia as an organization of Muscular Dystrophy parents and patients opines that the scheme has the potential of creating negative impact on the Muscular Dystrophy patients, particularly the Duchene Muscular Dystrophy (DMD) children. Also, it opines that the scheme might not sustain for a long for the following reasons;
1. Although, the scheme has provided for commuting the patients between their residence and the centre, DMD patients might become constrained to undertake daily travel and such travel it self could cause serious health problems to them.
2. Given the little number of patients so far identified in each district, the centre which is to be located at a place convenient to an implementing NGO and probably at an urban location could automatically exclude the rural patients who are mostly the poor and needy.
3. Given the fact that the main stream schools have been already denying admission to DMD children, the proposed day care centre might strengthen their denial. Even the parents could be tempted to drop their children from schools for reasons of day to day struggles. The scope provided by the scheme for such a condition would surely become a major contradiction to the recently enacted, ‘Right to Education Act’.
4. The proposed day care centre might also cause various other risks, including travel and in-premises accidents owing to the ignorance of the care takers who lack knowledge about DMD and experience in handling DMD patients. The inmates might also pick-up infection, many of which might cause serious troubles to them.
Recommendations

  • Mdfindia strongly recommends that the government must change its focus from ‘Centre based services’ to ‘home based services’. Services at the door steps would alone become sustainable and effective for children afflicted with Muscular Dystrophy. This could well be achieved by appointing a Physiotherapist for each taluk in the state. Given the present population of the MD patients, each Physiotherapist would be required to serve only around 15-20 patients in their respective taluk.
  • Another alternate would be of establishing a mobile clinic manned by one or two physiotherapists depending upon the number of MD patients in each district.
  • Last but not least, mdfindia wishes that the state must take into confidence the Muscular Dystrophy parents, particularly the mothers and organizations of MD parents/patients. A consultative process would alone help the state use its resources more effectively and meaningfully.

Experience sharing/needs Assessment meeting
with the Parents/Carers of Muscular Dystrophy Children/Patients

One of the very recent activities of the foundation was a meeting with the MD parents/patients on 1st November 2009 at Madurai. The experience sharing & needs assessment meeting brought new insights to the foundation and reinforced its commitment to the cause. The meeting ended by making everyone involved in the meeting to recognize that the end of a prolonged sorrow needn’t be destruction; but a commitment to a new beginning.