• About Muscular Dystrophy

    Not a disease but a genetic disorder that might occur even as a fresh mutation

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  • Types of Muscular Dystrophy

    Only organization in India that cares for all types of muscular dystrophy patients

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  • Latest research

    Facilitating access to clinical trials and research updates

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  • Diagnosis

    DNA testing (MLPA) for DMD/BMD simplified

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  • Prevention

    Don’t pass muscular dystrophy on to generations. You can stop it!

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Events

World Orphan Drug Congress Asia (3-4 June) and the 1st meeting of the Asia Pacific Alliance of Rare Disease Organizations-APARDO (5 June 2015), Singapore

Mr. M. Louis, Executive Director of Muscular Dystrophy Foundation India has been invited as a guest to both the events. The meeting of the APARDO will cover a variety of informative topics including: 'Orphan Drug Approvals and Access', 'Biopharmaceutical Innovation And Clinical Trials For Rare Diseases' and 'Health Communications'. The afternoon session will be an internal meeting to ratify its Constitution and plan next steps for the Alliance.

The World Orphan Drug Congress builds bridges amongst the orphan drug communities in Asia between Pharma companies, patients and regulators.

World Orphan Drug Congress Asia is the one stop shop for government, regulators, physicians, patient groups and industry to come together to develop sustainable market access strategies and overcome regulatory hurdles in Asia.

Showcasing successful case studies of orphan drug development in advanced nations like Japan, Korea, Taiwan and Australia, this event is dedicated to fostering partnerships and collaborations amongst the orphan drug community.

 

Jam packed across two days with numerous keynote presentations, interactive roundtable discussions and plenty of networking opportunities, you now can maximise your lead generation activities and meet with the people that matters most to Asia’s orphan drugs market.

- See more at: http://www.terrapinn.com/conference/world-orphan-drugs-congress-asia/our...

International workshop on, "Patient Organization Activism around the world" held at Brighton, United Kingdom during 18-19 May, 2015

Mr.M.Louis, Executive Director of Muscular Dystrophy Foundation India has participated as a delegate in the workshop that was organized by the Centre for Bio networking, School of Global studies, Department of Anthropology, University of Sussex. Mr.Louis has also met with with many international organizations including Action Duchene, Parent Project Italy, Euro Stem Cells etc and visited few other organizations during his week long stay.

Open dialogue with M/s. SAREPTA Theraputics, held on 06.04.2015

You might be aware that Sarepta Theraputics is one of the leading drug development companies engaged in developing ‘Eteplirsen’ – an exon skipping drug for Duchene Muscular Dystrophy patients.

In order to update the progress in seeking the approval of FDA for ETEPLIRSEN and discuss further in this regard with the patient support groups from across the world, Sarepta Theraputics has organized a closed conference call on 06.04.2015 at 11.30 PM (2.00 PM EDT).

M.Louis, Executive Director of Muscular Dystrophy Foundation India was invited by Dr. Edward M. Kaye, MD, the new CEO (interim), Sarepta Theraputics to participate in the conference. Mr. M. Louis has participated and assured his fullest support in finding a cure for DMD.

TREAT-NMD webinar on Post-Marketing Surveillance held on 21.01.2015

Mr. M. Louis, Executive Director of Muscular Dystrophy Foundation India has participated as an invitee and raised many pertinent questions including the scope of ‘Translarna’ and its global availability.

The TREAT-NMD Executive Committee has recently consulted with representatives of all key stakeholders in the neuromuscular community to ascertain the feasibility of developing a disease-specific post marketing surveillance platform.

Post marketing surveillance (PMS) is part of the drug development process (also known as Phase IV) and is mandated by the pharmaceutical regulators (FDA, EMA and other national bodies). This is to allow for the collection of safety and efficacy data once a drug has received (conditional) marketing approval  and to assess how it performs in 'the clinical setting'. PMS data has to be collected on every patient receiving the drug, or an agreed number of these patients, and is usually part of long-term data collection that can run for a period of about 10-15 years. For further details please visit http://www.treat-nmd.eu/resources/post-marketing-surveillance/introduction/

Building a strong voice for patients in India: Advocacy Network Founding Meeting-Habitat Centre, New Delhi, 12.11.2014.

Jointly organized by Consumer Connexion, Association of Community Pharmacists of India and Daksham A Foundation. Mr. M.Louis, Executive Director of MDF INDIA has deliberated in this meeting that lead to the formation of a 'Patient's safety advocacy network' in India.

Roundtable on ‘Patient needs and stem cell research in India’ -Delhi, 2nd July 2014

organized by Centre for Bionetworking in Asia, University of Sussex in partnership with Research and Information System for Developing Countries (RIS), Delhi and the Department of East Asian Studies at Delhi University.

Mr. M. Louis, Executive Director of MDF INDIA has been invited to be one of the panelists of this round table conference. Patients/parents residing in and around Delhi are most welcome to participate and benefit from the conference.

About the Conference: Patients of terminal and incurable conditions have diverse medical and non-medical needs. These range from everyday requirements around care-giving, quality healthcare and emotional support to more specialized needs such as genetic testing, disabled-friendly buildings and access to information about treatment options. In addition to fulfilling these everyday needs, many people living with terminal or incurable conditions are anxious for a breakthrough in biomedical research which will lead to a treatment to improve their quality of life. For many conditions, stem cell therapy is seen to have significant potential and, despite the fact that it remains unproven, is actively sought after by many patients.

In this roundtable, panellists will be asked to address the importance of stem cell research in the specific context of Indian patients living with terminal conditions such as muscular dystrophy, spinal cord injury, diabetes and cardiovascular disease. At the moment, basic research is being conducted across the country in government-funded biomedical and scientific institutes as well as in many private sector settings. Significant clinical research is also taking place in India—however, this is largely conducted by international pharmaceutical companies for drugs which are not necessarily aimed at the Indian population. Panellists will be asked to present their views on whether, given these factors, investing in stem cell research and experimental therapy should be considered a important priority by policymakers, health care providers and patient organisations when considering patient needs.

“Investiture Ceremony” of JEEVANA School, Madurai - 21.06.2014

Ms. G.Renganayaki Chairperson and M. Louis, Executive Director of our organization have been invited to be the chief guests for the ceremony. It is a solemn function where the Headgirl, the Vice Headgirl, the Headboy, the Vice Headboy and the Prefects take oath and badges are pinned. The chief guests will also honor the students who had done extremely well in the Public Exams this year and the teachers who had guided them.

STEM 2013 is the perfect amalgam of Science and Business. Research and Clinical Trials in Stem cell areas are proving advantageous in finding cures to many diseases. The resulting opportunity provides a good platform for commercialization. Industry is keen on benefitting from the prospects of business as already indicated by the big focus on regenerative medicine in a number of Pharma and Biotech companies.

STEM 2013 is building a common platform for the Scientists, Industry professionals, the academics and the Student fraternity to come together at this conference and network with each other and share their knowledge and experience in this subject which will lead to future path in the growth of new therapeutic area for the benefit of mankind. STEM 2013 speakers include scientists, researchers, industry professionals from biotechnological companies, pharmaceutical companies, doctors and academic faculties, IPR and Investment/Fund Managers/Bankers.

Muscular Dystrophy Foundation India has been the KNOWLEDGE PARTNER of this conference since 2010.

Please write to for registration

 

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.