In 2008, Satvinder Kaur and Sukhvinder Kaur’s world changed forever. Their mother, Swaranjit Kaur, a vibrant and newly retired government employee, was diagnosed with ALS — a disease they, like many families in India, knew almost nothing about.
Facing a devastating lack of resources, information, and medical support, the sisters refused to give up. They spent sleepless nights combing the internet, determined to find a way forward. What began as a personal journey of love and resilience became the foundation of a national movement: ALS Care and Support Foundation (ALSCAS) — India’s first 24/7 grassroots support community for people living with ALS (PALS) and their caregivers (CALS).
Today, ALSCAS has touched the lives of more than 750 families across India, offering not only practical care guidance but a true extended family built on compassion, knowledge, and unwavering hope.
Building a Home ICU — and a Community
In 2010, as their mother’s condition advanced, the sisters made a bold decision where no one believed was possible in India: to bring her home on a ventilator and create a fully functioning ICU — not in a hospital, but in their living room.
“We started with nothing — no information, no guidance, no support. It was like being left alone in an ocean. We decided if no one could help us, we would help ourselves — and eventually, help others too,” explained Satvinder.
With no formal medical training, they taught themselves every aspect of care: tracheostomy management, suction procedures, PEG feeding, and ventilator troubleshooting. Their colorful, warm home was filled not with machines and clinical equipment, but with laughter, family celebrations, television nights, and the vibrant love of a life fully lived.
“Every celebration, every birthday, every moment of happiness — it all happened in Mama’s room. She was the queen of our house, and even if her body couldn’t move, her mind was fully alive,” said Sukhvinder.
Remarkably, despite eight years of being ventilated at home, their mother never developed a bedsore — a testament to the attentive, meticulous care they provided.
Satvinder said, “Every day, we were improvising. We didn’t have medical training — but that meant we weren’t trapped by rigid thinking. We learned, adapted, and created our own processes to care for Mama better.” Their experience shattered assumptions about what was possible for ALS care in India — and planted the seed for something bigger.
In 2015, they created a simple website to share their learnings, opened an email address for support inquiries, and launched a WhatsApp group for ALS families. What started with five families soon grew into hundreds. Through this journey, countless precious blessings have been received, blessings that are beyond words, Satvinder said.
By 2022, ALSCAS formally registered as a nonprofit organization under Section 8 of the Companies Act 2013.
A Family Grown Across a Nation
At its heart, ALSCAS is more than a patient group — it is a family. Through thousands of WhatsApp exchanges, calls, Zoom sessions, and in-person visits, the ALSCAS community has become a lifeline for families across India’s cities and rural regions alike.
“It’s not just information we share — it’s hope. It’s hearing someone say, ‘You’re not alone, we’ve been there too.’ That’s what changes everything,” Satvinder said.
Key services include:
- 24/7 WhatsApp group Support: Immediate help with everything from navigating initial mobility, swallowing, speech issues to advanced stages including PEG/trachea surgery, BiPAP/ ventilator settings and home ICU management.
- Local Chapters: State-based WhatsApp groups allow patients and caregivers to connect for local resources, device sharing, and emotional support.
- Home ICU group: Specialized guidance for setting up ventilator care at home, often supporting families in regions with limited access to medical resources.
- Educational Initiatives: Expert-led webinars, “caregiver-led” how-to sessions, and simplified guides (like their “Ready Reckoner” for ALS management) make vital information accessible.
- Advocacy: ALSCAS champions the inclusion of ALS in India’s rare disease policies, pushes for broader insurance support, and engages with ministries and scientific bodies to amplify the ALS voice.
- Financial Assistance: Helping families access essential medical equipment and other needs through financial support funded by members of the community.
- Innovative Solutions: The community has pioneered low-cost communication and care adaptations — from using a simple laser pointer communication board to a bell attached to toe with a thread for alerting the caregiver — many of which were recognized at the World Congress for Neurorehabilitation in Vancouver and IANCON 2023 at Madurai, India.
Through every connection, ALSCAS reinforces a simple but radical belief: no one should face ALS alone.
Challenges on the Road Ahead
In India, major gaps still remain:
- Low awareness among the general public and even within parts of the medical community.
- Delayed or incorrect diagnoses due to lack of specialized neurology services, not only in rural areas but in metropolitan cities as well.
- Language and literacy barrier in accessing information.
- No inclusion of ALS in national rare disease reimbursement policies.
- Limited access to global trials and advanced treatments.
- Financial strain due to the high cost of ventilators, assistive devices, and care — often without insurance coverage.
- Absence of multidisciplinary ALS care centres.
Despite these hurdles, Satvinder and the ALSCAS team continue to push forward — advocating for policy change, knowledge sharing with doctors, and building bridges to clinical research opportunities.
A Vision Shared with Target ALS
In 2024, ALSCAS connected with Target ALS, marking a powerful step toward global collaboration. Both organizations share a common vision: a future where care, dignity, and access to cutting-edge treatments are realities for every person living with ALS, no matter where they live.
Satvinder said, “We are blessed to now connect with organizations like Target ALS. It shows that our voices — the voices of Indian ALS families — are finally being heard across the world.”
For Satvinder and the ALSCAS family, hope is not a passive wish. It is an active, daily commitment — rooted in the memories of their mother, fueled by the resilience of every family they support, and strengthened by partnerships across borders.
“Life is difficult, tough, and totally unpredictable — but not impossible,” she added.
Target ALS is proud to stand alongside ALS Care and Support Foundation as we work together to create a future of hope, breakthroughs, and community — in India, and around the world.
