1. UCD0305:Longitudinal study of the relationship between impairment, activity, Limitation, Participation and Quality of Life in persons with Confirmed Duchenne Muscular Dystrophy as part of CINRG – Cooperative International Neuromuscular Research Group. This study was completed and paper published in the year 2013 in Muscle and Nerve.
2. A phase 3, Randomized, Double Blind, Placebo Controlled efficacy and safety study of Ataluren in patients with non-sense mutation Duchenne Muscular Dystrophy and open label extension – PTC124-GD041-DMD – ongoing at present. Enrolment has been completed.
3. Avexs 101 Global managed Access Program – AVXS 101 – MAP 002 – one time dose of Onasemnogeneabeparovec to a limited number of patients with Spinal Muscular Atrophy. This study has had conditional approval from our Ethics committee and is awaiting enrolment of patients in to the study.
4. Exosome proteomic profiling of biological samples from stratified Duchenne Muscular Dystrophy patients – in collaboration with department of Biotechnology – PhD scholar Ms.ArchanaRajavel, guided by Prof.Raja, Dept of genetic engineering, SRM University, Chennai. This has been approved by our Ethics committee and 12 patient samples have been collected and analysed. The study is ongoing at present.
5. We have started enrolment of patients in to the national registry of ICMR on neuro-muscular disorders. Currently patients with Duchenne Muscular Dystrophy, Spinal muscular Atrophy and Limb Girdle muscular Dystrophy are being enrolled.
6. We are part of the Treat NMD SMA registry and the TGDOCNMD registry and are enrolling patients in to these registries.
We thank you for logging on to this page of our site!
Greetings Sir/Madam/Child,
We thank you for logging on to this page of our site!
Being an association working for the betterment of the children with Muscular Dystrophy, support from generous donors and sponsors like you will make our efforts advance and prove fruitful.
We are thankful to those Donors and Sponsors of the past who have helped us reach this far.
Here are some ways for you to help us at will:
You think it’s a noble cause?
Then…. make a Donation!
If you prefer something material than monetary support will help the affected children, then go ahead to sponsor a Wheel Chair.
If you prefer to contribute towards the enhancement of facilities in Research &Development or diagnosis of Muscular Dystrophy, please do so.
Well if you prefer to spend some time with children, entertaining them, then spend on or sponsor an Event or Camp based on the Calendar of the Association or after a consult with us.
This is an opportunity for Business Houses and Firms like yours to sponsor an association with a noble cause.
If you would like to sponsor our association, kindly fill in the details below and we would be grateful to contact you regarding the procedures.