Series of programs at raising muscular dystrophy initiated in the month of September
Series of programs at raising muscular dystrophy initiated in the month of September
Shimla: During the month of September, we initiated a series of programs aimed at raising awareness about muscular dystrophy. One significant endeavour was the launch of a podcast in collaboration with ‘Cliq India’ channel. Additionally, we partnered with Shoolini University and the medical fraternity to spread awareness among schools and medical institutions.
Our efforts have already reached school students in Bangalore, Indore, and Solan. Notably, on September 7th, we observed Duchenne Muscular Dystrophy Day. The Indian Association of Muscular Dystrophy commemorated this day at the Integrated Muscular Dystrophy Rehabilitation Center in Solan. During the two-hour program, a poignant skit was performed by physiotherapists, shedding light on the initial journey families undertake when they first seek medical assistance after discovering that their child is facing health challenges.
The session commenced with the inauguration by Dr. Shrikant Baldi, Chairman of RERA Himachal Pradesh. The main speakers for the event were Ms. Sanjana Goyal, President of IAMD and Dr. Narendra Chirmule, a geneticist who joined the session remotely from Philadelphia. A dedicated team of volunteers from Shoolini provided a comprehensive presentation on Muscular Dystrophy. Mitali, from Shoolini, effectively coordinated the entire session.
The session saw active participation from several notable institutions, including the National Institute for the Empowerment of Persons with Intellectual Disabilities (Divyangjan) (NIEPID) in Bandra, Mumbai, Shoolini University, Sheds College of Law, Nursing College Solan, L.R. University, and the University of Horticulture and Forestry Solan.
This session served as a valuable platform for students from Shoolini University to come together and exchange insights and knowledge. Furthermore, during the event, we premiered a video across various channels. This video shed light on the experiences of children affected by Duchenne muscular dystrophy who had taken part in a week-long program at the Integrated Muscular Dystrophy Rehabilitation Center.
The evening session was truly uplifting, as participants of our programs, along with their parents and dedicated volunteers, showcased their resilience by dancing in their wheelchairs. The evening culminated with motivational songs performed by these inspiring participants.
Introduction
Indian Association of Muscular Dystrophy’s Appeal to the Government
Acknowledgment
We express our heartfelt gratitude to the government for addressing the concerns of Muscular Dystrophy patients during Mann Ki Baat.
Impactful Legislation
We are immensely thankful to Honourable Shri Modi Ji for enacting the Rights for Persons with Disabilities (RPwD) Act in 2016, a transformational shift in:
Shifting Perceptions: Moving from a charity-based approach to recognizing the rights of people with disabilities.
Equal Opportunities: Government initiatives that ensure equal rights and opportunities for us to contribute to our nation’s progress.
Our Mission
Representing the Indian Association of Muscular Dystrophy (IAMD) on the 100th episode of the Mann Ki Baat Conclave from April 25-29, our organization’s mission is to instill hope and alleviate suffering caused by this debilitating illness.
Our Work
Since 1992, IAMD has dedicated itself to uniting patients afflicted by Muscular Dystrophy, providing them with solace through therapeutic care and various support activities.
Panel Members
Our dedicated team includes:
Chairperson: Mrs. Uma Baldi – Contact: 9418539732
President: Ms. Sanjana Goyal (Muscular Dystrophy patient, Recipient of National award by honourable President Dr. APJ Abdul Kalam) – Contacts: 9418054877, 9218098999
Gen. Secretary: Mr. Vipul Goyal (Muscular Dystrophy patient) – Contact: 9816158823
Critical Needs
Thousands of Muscular Dystrophy patients in India face dire conditions due to the absence of essential support in our country, including:
Awareness: Insufficient awareness among patients, parents, medical professionals, and the public about Muscular Dystrophy and its progression, leading to a bleak future for affected families.
Research Funding: The high cost of overseas medications (INR 3 Crores per patient per year) necessitates funding for indigenous research. Immediate funding of INR 25 Crores is crucial to start this endeavour.
Insurance Policies: Lack of insurance policies tailored for Muscular Dystrophy patients.
Caregiver Training and Employment: Urgent establishment of a government-supported infrastructure for training caregivers through ministries like Employment and Skill Development.
Specialized Physiotherapy Services: Formalized infrastructure for providing physiotherapists in rural and urban areas through government training programs.
Assistive Devices: Difficulty in accessing assistive devices that can greatly improve the lives of patients.
Appeal to the Government
On behalf of millions affected by Muscular Dystrophy, we earnestly appeal to the government to provide these fundamental facilities, alleviating the burden on their loved ones who are tirelessly supporting them.
