FED

FOUNDATION TO ERADICATE DUCHENNE

(Project Period: October 2011- September 2012)

Title: Strengthening & expanding the working model for developing countries towards Identification, Prevention, Management & Awareness of Duchenne Muscular Dystrophy.

 

Goals & Achievements:

Goal 1.Creation of Registry:

  1. a) Molecular Diagnostics through routine DMD diagnostics as per International guidelines

• Number of samples received from Clinicians of various hospitals in India.

DMD Proband Samples- 235; DMD Carrier samples- 80

• Number of samples received through outreach programmes

DMD Proband Samples- 167; DMD Carrier samples- 77

Goal 2. DISSEMINATION OF INFORMATION ON DMD – Education & Awareness through workshops & Conference:

The 2012 version of the much-loved “Fun-weekends” conducted annually by MDCRC, called ‘Conquer Duchenne’ was a spectacular occasion especially for the children. ‘Conquer Duchenne 2012’ was a two-day event organized aimed to re- emphasise MDCRC’S holistic approach to handle and end Duchenne. The focus of this event was the integrated approach required to address such orphan disorders where affected children, families, care givers, scientists, clinicins, paramedics, policy makers and public were brought together. There were special sessions organized for parents, Care-givers, Physiotherapists and Students.

The event was conducted at Black Thunder resort Mettupalayam, Coimbatore, on 22nd and 23rd January 2012.

Goal 3. Networking and representing in National and International forum:

Dr. B.R.Lakshmi participated in various International Conferences held in 2011 to establish new contacts and to network with the International Organization to understand the current scenario of the disorder & recent upcoming research in the area of work. These International forums provide platform for tomorrow’s collaborative efforts and research towards the affected community.

International Conferences attended are listed below:

• B.R.Lakshmi participated in the US Conference on Rare Diseases and Orphan Products, Washington, DC, USA conducted by DIA, USA, held on 11th to 13th October 2011.

• B.R.Lakshmi attended the 12th International Congress of Human Genetics/ASHG 61st Annual Meeting, Montreal, held on 11th to 15th October 2011. She presented a poster titled, “A working model for developing countries towards fulfilling the promise of molecular medicine in the rare lethal genetic disorder, Duchenne Muscular Dystrophy”.

• Participation in the Treat-NMD Conference 2011, Geneva, Switzerland, between 8th to 11th November 2011. Dr.B.R.Lakshmi presented a poster titled, “Resource building for clinical services for DMD- a working model”.

• Dr.B.R.Lakshmi attended the Treat NMD 5th Curator and 4th TGDOC meeting, held on 11th to 12th November 2011.

Goal 4. DNA Bio bank….Systems followed to continue the growing DNA bank:

The DNA bio-bank is organized well and basically coded in the system to pick out the DNA required at any point of time.  The existing Biobank consists of totally 2500 DNA samples, of which 1500 were DMD proband samples and in that around 1000 are of confirmed DMD cases. The rest of the total comprise of DMD Carriers (500 Cases) and other Muscular Dystrophy around 1000 cases.

WHY

Public Health to us at MDCRC is about the community at large. The health of the community at different levels and when seen through different perspectives becomes a subject which is complete, holistic and is a melting pot for a plethora of technical disciplines. At MDCRC we do align with a goal of working for community health by working on modular projects related to Women and Child health, disease prevention, Health informatics, Community building and its associated research, Water resources, Arts, Indic Sciences, Cultural issues which are relevant to the contemporary generation. The style which we adopt is to focus on totally neglected aspects and form a working model towards a better situation. The need for this approach is to bring back the glory of humanity in general and which percolates to a healthier India.

The disorders in current focus are Orphan disorders, meaning disorders whose numbers are said to be less (in the Western diaspora) which neither doesn’t majorly impact the community’s currently used health metric nor does it provide a base for extensive drug research and its production. This view is only true until the numbers are low and also the way we look at Public health in general. There had been no concerted efforts in the domain of Orphan disorders in India. Mission of ours then, was to bring the science, the services pertaining to a particular problem statement and which thereby gives rise to an evolution of a model. This forges a way of approaching Health from a community standpoint thereby offering an impactful experience to all stake-holders. This is where the core culture MDCRC comes in where we believe that in Public Health domain in particular, the science and the associated services need to reach mankind at large without a number bias or number crunching.

With a background in Biochemistry and Genetics, Dr. Lakshmi, in 2006 had started working on genetic disorders with specific emphasis on community building.

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