BharathMD Foundation is a concerted effort by parents or people who have been affected by the pain of raising children diagnosed with muscular dystrophies. They want to create awareness and finally build a strong ecosystem where no child stays untreated or uncared for.
Please share the thought behind putting together this Foundation.
The thought behind establishing the foundation began with a WhatsApp group where like-minded individuals shared information and exchanged views. This informal network eventually evolved into a registered foundation, enabling structured activities to create awareness and engage various stakeholders. The founders' primary intention was to give back to society, fostering a sense of responsibility and promoting awareness about specific issues among all sections of the community.
How did the founders get together?
The founders are Raghu Bhai M living in Bengaluru, a mother of 33 years old DMD Adult who is a software Engineer in SAP; Anitha Santosh, a mother of a 13 years old son with DMD going to High School residing in Kerala- Thrissur; and Rama Lakshmi living in Hyderabad and mother of an 11 year old school going boy with DMD and ADHD
During the COVID-19 pandemic, they engaged in a series of discussions that ultimately led to the decision to establish a foundation. Despite being geographically dispersed across different parts of India – our founders are from Odisha (currently residing in Karnataka), Kerala (currently residing in Muscat), and Telangana - their shared experiences and passion for creating positive change brought them together.
They named it BharathMD Foundation, which reflects their vision to inclusively reach and support individuals across all parts of Bharat, embracing its rich diversity of languages, cultures and demographics.
What is the focus of your organization? What are your top priorities?
The focus of BharathMD Foundation is to empower and support families affected by Duchenne Muscular Dystrophy (DMD) and other types of Muscular Dystrophies (MD) across India.
BharathMD Foundation's focus is on the Prevention, Management, and Care (PMC) model, delivered through the 5 A's: Acceptance, Awareness, Affordable, Accessible, Approach.
Our PMC model encompasses:
- Prevention: Collaborating with government and non-government institutions to promote genetic screening and investigation campaigns, providing genetic counseling to families, and raising awareness about the disease.
- Management: Supporting neuromuscular centers and facilitating access to specialized care, enabling individuals to receive timely interventions and treatment.
- Care: Assisting families with daily needs, providing assistive devices, and contributing to their overall well-being, ensuring they can lead fulfilling lives.
Our top priorities are to provide comprehensive support to individuals affected by the disease and empower them to thrive.
What exactly do you mean by parent advocacy support group? Please explain.
A Parent Advocacy Organisation Support Group is a collective group of parents, caregivers and individuals affected by a specific condition or issue, such as Muscular Dystrophy. These groups provide a platform for sharing experiences, resources, and support, while advocating for the needs and rights of their members. They often focus on raising awareness, influencing policy, and improving access to services, care and support for families and individuals affected by the condition.
Parent advocacy support groups play a vital role in society by guiding new families through the challenges of rare diseases, creating awareness, influencing policy-making, and providing emotional support. These groups empower families to become advocates for themselves and their loved ones, promoting self-advocacy and self-empowerment. By sharing their experiences and expertise, parent advocacy groups help bridge gaps in healthcare systems, they drive research and innovation, and build a sort of community among families affected by rare diseases.
What do you hope to achieve through this effort?
Through our efforts, we hope to achieve a profound impact on the lives of families affected by this disease. Previously, parents faced immense uncertainty and helplessness, struggling to cope with the physical, social, emotional, mental and economic burdens of caring for a loved one with this condition. Our goal is to create hope and empowerment, providing them with the necessary support and resources to navigate this challenging journey. By fostering an inclusive ecosystem, we aim to promote societal acceptance, enabling individuals with the disease to live fulfilling lives and be valued members of their communities.
How do these chapters operate?
Our organization operates through a network of state-level teams, comprising primary caregivers who are passionate about supporting the cause. These teams are formed based on geographical location, with language serving as a key connector. Their activities are aligned with our core committee's objectives, addressing specific needs as they arise. We conduct physical camps and webinars at the local level, while also collaborating with established state-level associations to amplify our impact and reach a broader audience.
Are there any chapter specific services that you offer?
We offer a range of chapter-specific services, including conducting state-level camps with specialists such as neurologists, cardiologists, pulmonologists and physiotherapists, providing consultations, therapies, and referrals. We also offer family counselling sessions in the local language, peer support groups, and caregiver training to provide emotional support and empowerment.
Additionally, we identify children in need of assistive devices such as wheelchairs, Bipap etc supports in their daily need of groceries, school fees etc and coordinate with donors or government agencies to distribute them. We facilitate access to state-specific schemes, helping families apply for pension schemes, while advocating with local health and social welfare departments.
Furthermore, we run local awareness programs in schools, hospitals, Corporates, communities and rural areas to educate about the condition, and engage with state policymakers to advocate for better inclusion and care access.
What is the biggest challenge you face?
One of the biggest challenges we face at BharathMD Foundation is ensuring timely and equitable access to diagnosis, treatment, and care for Muscular Dystrophy patients across India's diverse and resource-constrained regions. This is compounded by several factors, including a lack of acceptance and awareness about the disease and its progression among all stakeholders. Furthermore, we struggle with issues such as limited affordability of assistive devices, inaccessible infrastructure, and a general lack of understanding and approach towards rare diseases within society and among individuals
What are your plans for the future? Where do you see yourself in the next 5 years?
BharathMD Foundation has a clear vision for the future, focusing on improving the lives of those affected by Duchenne and other forms of Muscular Dystrophy. Our key plans include expanding Neuromuscular Care (NMC) Centers nationwide, each with a dedicated team of specialists, to provide accessible and affordable care to thousands of patients.
We also aim to promote early diagnosis through genetic screening and counseling programs, working with governments to include Muscular Dystrophy in disability and health schemes, and advocating for a more structured national policy on rare diseases. Additionally, we plan to collaborate with hospitals and pharmaceutical partners to bring more clinical trials and targeted treatment options to India, enabling patients to access cutting-edge care.
Furthermore, we will be working towards establishing the necessary infrastructure to conduct investigations and studies, with the ultimate goal of freeing families with a history of the disease from the burden of Muscular Dystrophy. We are also striving to spread awareness about the condition across the country, ensuring that every region has access to accurate information and resources.
Our vision also includes increasing the number of hospitals with international accreditation, setting up more rehabilitation centers, and providing comprehensive support services to individuals and families affected by Muscular Dystrophy. By working towards these goals, we aim to create a future where individuals with Muscular Dystrophy can lead fulfilling lives, and families can thrive without the burden of this disease.
