July 15, 2024

National Advocacy Summit on Muscular Dystrophy held by Ayushkama Foundation and PPMD South India on 9th October at New Delhi

New Delhi (India), October 12: Ayushkama Foundation in Collaboration with PPMD South India organized “Muscular Dystrophy: National Advocacy summit 2022″, on 9th of October, Sunday, at India Habitat Center, New Delhi.

Both the organizations are a patient and parent advocacy organizations led by Anubha Singhal, Warrior of LGMD & Founder of Ayushkama, and Bhaskar Rajan, Founder of PPMDSI & Father of a DMD Warrior. They are working for the welfare of Muscular Dystrophy warriors, a condition with various types and subtypes causing progressive muscle weakness and wasting, leading to non-ambulant conditions varied as per individuals.

“Birth prevalence of DMD has been estimated at 1 in 3,500 male births and Becker muscular dystrophy at 1 in 20,000 male births. There are 9 other types of Muscular Dystrophy like Limb Girdle muscular dystrophy (LGMD), Facioscapulohumeral muscular dystrophy (FSHD) and more with a significant prevalence in India.

—> The Summit Aimed at Bringing the Major Stakeholders Together

The purpose of the meeting was to bring together major stakeholders, such as Scientists, Doctors, Researchers, Philanthropists, government-bodies involved in Medical research & healthcare, and Patient-Parent advocacy organizations, for a cohesive approach to identify the gaps in the system for treating Muscular Dystrophy patients and helping them live a life with dignity. The summit was well hosted by Yashika Pokhriyal from Musing spaces, and the panel discussions were moderated by Anubha Singhal.

The major discussion was divided into 4 panels, with major agendas including eminent panelists, as doctors and scientists from government and private institutions like AIIMS, PGI Chandigarh, SMS Jaipur, ICMR and so on. Further panelists also included good examples of Patient Advocacy organizations like WWGM, IndoUSRare, CureSMA, MSSI and few more. Our Chief Guest, Dr. Arun Kumar, President of Delhi Medical Association, offered his support to get together and submit a memorandum of our demands to the Government.

The summit was supported by, SMC Global, Ostrich Mobility and Lions Club New Delhi Diamond along with our trustee members who committed to stand with us in our future endeavors.

—> Recent Developments in Muscular Dystrophy

Starting with the 1st panel on ‘recent developments in Muscular Dystrophy’, Dr. Shefali Gulati from AIIMS, highlighted the current research in India and some International collaborations in progress.

But there is a high need for raising funds for Research in India, and this requires support from government bodies as well as we as Advocacy Organizations need to form larger alliances of all Neuro-Muscular diseases as an umbrella organization.

There is no CURE for us but we have many international research projects where clinical trials are in phase 3 and we expect our government to bring them through “Bridging Trials” in India at affordable rates. Gene Therapy and gene editing using CRISPR-CAS9 are emerging as the most promising form of treatment for now.

—> Early Diagnosis and Research for the Cure of Muscular Dystrophy

Panel 2, carried forward the discussions about ‘Diagnosis and Research’. It came out that the need for affordable diagnosis (genetic testing) and research and medication can be possible in India at much lower costs with government assistance and changes in IP laws.

Under the “Make in India” project and the “Atma Nirbhar Bharat Abhiyan” we must start with the process of research in gene therapy and other drugs needed to support our MD community. Till then, we need to provide financial assistance and equal opportunities to the patients and caregivers on a regular basis so that they do not remain dependent on their daily needs and live a life with dignity.

—> Holistic Care and Management of the Progressive Disorder

Panel 3, discussed ‘Holistic Care and Management’ where Anubha, founder of Ayushkama, suggested building more capacities for the right stakeholders such as Neurologists, Physiotherapists, and Nutritionists for a wider reach of the right treatment to all parts of the country.

To which the panel suggested ‘Online Tele – NeuroMuscular Clinics’ and organizing training programs for Capacity building with the help of Leading government institutions like AIIMS. As regular Nutrition, physiotherapy, and also emotional well-being are very important for all our MD warriors.

—> Right Advocacy and Policy Making for Neuro-Muscular conditions like Muscular Dystrophy

Panel 4, highlighted the need for the ‘Right Advocacy and Policy Making’. We humbly seek the support of the government to join hands with the NGOs working together for the cause to uplift the primary agendas to give a better life to our warriors, suffering on a daily basis with new challenges. It’s high time for the need of a government initiated ‘Data Repository for Muscular Dystrophy’, along with the support of organizations like us to show our united strength.

—> Response to the Advocacy Summit

There were 60 participants who joined us in person at India Habitat center, and were intrigued with the insightful discussions. Patients and families participated in clearing their doubts and sharing their experiences with access to treatments, diagnosis and lack of opportunities for good living.

90+ participants joined online along with some panelists as doctors and scientists across India. We received an overwhelming response from the community. A BMD warrior, Kashif Imran says, “It is today in this conference, when I came to know about the hard work by Ayushkama Foundation in all these years. Your perseverance has bore fruits now as we all gain strength and confidence in bringing a big change.” All of them agree to join hands with us in this journey of Advocacy and fight for the cure of this dilapidated condition.

—> Facts about Muscular Dystrophy (Can be excluded if Word limit increases)

Many children and young people (in lakhs) suffer from a serious disease called Muscular Dystrophy. It is a group of rare genetic diseases that cause progressive weakness and loss of muscle mass over the years. There is an outcry for treatment by every Muscular Dystrophy afflicted and their parents. This wretched disease spares no kid, no adult, no gender, no caste, no religion, no income, no ethnicity. There are over 5-7 lakh young boys suffering from a most severe, fatal and wretched form of this disorder called DUCHENNE MUSCULAR DYSTROPHY (DMD), with age they find difficulty in walking, become wheelchair bound and at a later stage they will be bedridden and become dependent on their parents. Eventually they die in their early 20’s without getting any proper care and medication.

Other forms of MD are the entire set of LIMB GIRDLE MUSCULAR DYSTROPHIES (LGMDs), the most common form of adult MD, which have over 30 subtypes known to adversely affect shoulder and pelvic muscles. In their case, disease starts showing symptoms from the age of 16-20. With age, as disease progresses they also get on wheelchairs and become dependent, unable to carry out their Activities of Daily Living (ADLs).

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