MDF INDIA is the only DPO of/for muscular dystrophy patients in India. The board of trustees of MDF INDIA is solely comprised of patients and parents. While our patients and their families set our directions and help prioritize interventions, the board of trustees provides the much required checks & balance in our pursuit. Therefore, our experiences come from our own suffering and as augmented by the experiences of all our trustees. Our activities and program hails from within and based on the needs of our fellow parents as follows;
Major Activities: MDF INDIA places its thrust equally in medical and as well as non-medical needs of the communities it works with;
Awareness generation: Within 5 years of operation, we have reached out to 18,000+ families across the country and emerged as the single largest organization of / for Muscular Dystrophy (MD) communities in India. The number has been fast increasing with referrals from different sources.
Care & Management: Early intervention and Community Based Rehabilitation are projects that have the following activities within.
- Training to caregivers: More than 350 care givers have benefited by learning the dos & don’ts for caring for people with MD including basic physical exercises, weight management, respiratory management, periodical health assessment, importance of education etc.
- Psycho-social counseling: The weekly average of (psycho-social) counseling hours during 2014-15 has touched 10 hours.
- Educational Assistance: We have been strongly advocating for continuing the education at least through alternative channels if not necessarily the mainstream. Also, we sponsor the full cost of education including daily commuting of poor children. We have ensured admission/ retention of 234 children till date by advocating with their schools and parents.
- Direct Assistance: Providing rehabilitation tools & appliances and livelihood assistance forms part of our direct assistance program. More than 400 patients have benefited since 2010.
- Income generation support: We have been providing grant assistance to poor muscular dystrophy families aiming at improving their economic conditions and thereby ensuring that their MD children are properly cared for. Thirty poor families have been assisted so far.
Experiments & Clinical trials: We have temporarily suspended the stem cell experiment that has benefited 45 patients over 2 years. We have seen impressive results while learning a lot. We are only committed to re-launch it with improvised protocols, follow-up & monitoring mechanisms and more importantly affordability for all. Also, we are in the nascent stages of launching two different clinical trials; one in partnership with a U.S based pharmaceutical company and the other from Spain.
Prevention: Educating families of the carrier risk & possible preventive measures by offering genetic counseling and guiding for carrier analysis, gene sequencing, prenatal testing etc., are core activities under this program. So far, we have prevented at least 37 defective births by genetic counseling and medical guidance.
Advocacy & Campaigning: One of our major achievements in this direction was that of including ‘Muscular Dystrophy’ as one of the types of disability in the ‘Right of Persons with Disabilities Bill, 2014”.
Muscular Dystrophy Resource Center (MDRC)-Supported by PTC Therapeutics
Alarming gaps in the care & management of DMD are what the MDRC intends to fill-in by providing set of distinct services. Upon admission of a DMD child at the MDRC, MDF INDIA commits to perform the following;
- Assist the parent to do the genetic analysis (MLPA for DMD/BMD) to their child, if not already done. Charges as appropriate are applicable.
- Evaluate the child by a qualified physiotherapist and design a suitable physiotherapy program that contains the short term and as well as long term goals.
- Perform the physiotherapy on a daily basis or as appropriate to a child and make sure that the short term goal of the physiotherapy program is achieved.
- Train the mother to perform herself the stretching exercises and other basic exercises on her child. This would help continue the physical exercise therapy to her son back home without having to depend on a Physiotherapist who is hardly accessible.
- Educate the mother on the facts of DMD, Dos & Don’ts’, Weight management, Respiratory management, Cardiac management, Preventing further inheritance, latest research, etc.
- Counsel the mother about dealing her DMD child and his siblings, managing her emotions & distress.
- Educate the mother of various provisions under the Disability Law, procedures to obtain a national disability ID card, etc.,
- Coaching children in Yoga, Art & craft, music etc., as appropriate
- Periodical assessment of the child & Follow-up
Completed project: We have successfully completed a project titled, “Sustainable actions for economic empowerment of muscular dystrophy families and PWDs” – a cross disability Project. The project that was funded by ABILIS Foundation, The Netherlands has ended on 31.8.2015.