New Delhi, 7 November 2022: The ALS Care & Support Foundation had the proud privilege to be the voice of the Amyotrophic Lateral Sclerosis (ALS) community in India at the 18th Asian Oceanian Congress of Neurology (AOCN) and 29th Annual conference of the Indian Academy of Neurology (IANCON).
The platform was ‘Nerurons ki Awaaz’, a public awareness and advocacy initiative of IANCON. The session on ALS brought together doctors, researchers academicians and over 70 plus persons from the ALS community, both people living with ALS (PALS) and their caregivers (CALS).
Expressing her gratitude to IANCON for the opportunity to share the experiences of the ALS community at this important forum, Satvinder Kaur, co-founder of the ALS Care & Support Foundation said, “This is an unprecedent development. IANCON has bridged the gap between doctors and patients and provided a strong foundation for a patient-centric approach for treatment of ALS and other neurological disorders.”
Elaborating further, she added, “We are hopeful that in the near future we will also see other positive ALS related developments in India – inclusion in the rare diseases list; research and trials in India; access to latest global research and therapies; access to free lifesaving drugs, supplements and assistive devices; and development of ALS support centres.”
The two-hour interactive session brought alive what living with ALS means. Three caregivers shared their personal journeys – the emotions, the day to challenges, the innovations of caregivers to make the life of PALS more comfortable, and above all the triumph of hope over despair.
The session was also addressed by Dr Ashutosh and Dr Vineeth Jaison; they shared information about ALS, its treatment and new research. Dr Faruq from CSIR- Institute of Genomics and Integrative Biology shared his experience on the use of genetics for ALS diagnosis and investigations.
In her concluding address, Dr M. Gourie Devi, Senior Consultant Neurologist, Sir Ganga Ram Hospital said that while she has been treating ALS patients for many decades, this is the first time that their journey has been platformed. “I salute the patients, the caregivers. They are the true warriors,” she said.
“ALS is a rare disease and we need more and more awareness not only among the public but also among health care professionals. I congratulate IANCON for this initiative. Early diagnosis with institution of supportive treatment is essential to improve the quality of life. There are a number of challenges but working together, the government, researchers and the ALS community, we can make a difference,” she added.
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~ Progressive neurodegenerative disease; average life expectancy of 2-5 years
~ Every 90 minutes someone is diagnosed or passes away with ALS
~ Globally 4.5 lakh are living with ALS; in India it is around 70,000-1 lakh
~ Symptoms: Muscle weakness and twitching; difficulty in swallowing, speech and breathing; loss of balance and fatigue; drooling