http://www.alslifemanagement.weebly.com/

ALS Care & Support, India, Indian international centre (IIC), Delhi (2026)

Q: What is the address?

Indian International Centre (IIC)

26/05/2026

ALSCAS Heroes 💙 | Story 06

Continuing with another inspiring story from ALSCAS Heroes…

This is a story of resilience, innovation, and the determination to keep moving forward despite life’s greatest challenges.

Sathiya Narayanan, an Instrumentation Engineer, built a successful career working on major power plant and smelter projects across India and abroad. In 2017, driven by ambition and hard work, he founded his own engineering projects and industrial hardware supply firm.

Life changed unexpectedly in July 2018 when he was diagnosed with amyotrophic lateral sclerosis (ALS), a Motor Neuron Disease. As the condition progressed, he had to shut down his business and face immense physical and financial challenges. Yet, even in the face of adversity, Sathiya chose resilience over defeat.

Today, despite limited mobility and increasing physical dependence, he remains mentally strong through regular physiotherapy and meditation. He believes that early medical intervention, physical activity, and mental stability have played an important role in helping him stay strong.

What makes his story even more remarkable is his continued spirit of innovation. Using eye-tracking and facial-movement technology, Sathiya is developing a communication-based mobile application to help people with severe speech and mobility challenges express themselves more independently.

Sathiya’s journey reminds us that ALS may limit the body, but it can never limit determination, purpose, or the power to create change.

💙 Story 06 | Resilience. Innovation. Hope.

19/05/2026

ALSCAS Heroes 💙 | ALS Awareness Month

Continuing with another inspiring story from ALSCAS Heroes…

This is a story of resilience, family, and finding strength through community.

Living with ALS is often a rollercoaster of emotions, filled with challenges, yet also moments of love, courage, and hope.

S. Narayana Rao, a mechanical engineer from Bengaluru, began his ALS/MND journey in December 2014 when he noticed weakness in his right hand. Over time, the condition progressed, affecting all four limbs and his speech. Yet through every challenge, he continued moving forward with determination.

His family has been his greatest strength, a loving wife who stands as his pillar of support, caring for him every step of the way; sons who keep him connected to the world; and parents who remain his constant foundation.

In 2022, becoming part of the ALSCAS community brought connection, knowledge, and hope, including access to gene testing made possible through collective efforts.

Narayana Rao’s journey reminds us that while ALS may change many aspects of life, the strength of love, family, and community can help us face every challenge with courage.

💙 Story 05 | Resilience. Family. Community. Hope.

13/05/2026

ALSCAS Heroes 💙 | Story 04
ALS Awareness Month

Continuing with another inspiring story from ALSCAS Heroes series...

This is the story of Arepu Vijaya Vani, a woman whose life reflected sacrifice, faith, and unconditional love.

Born in a small village in Andhra Pradesh, life challenged her early, but her determination never faded. Though she could not continue her own education, she made a promise that her children would receive the opportunities she never had. Through hard work, discipline, and endless sacrifices, she helped build a brighter future for her family.

Deeply spiritual and compassionate, she found joy in music, the Bhagavad Gita, caring for cows, and feeding stray animals with kindness.

In her later years, she bravely battled ALS. Her family stood beside her with the same love and care she had always given them until her last breath in 2025.

Her life reminds us that true strength is found in selflessness, resilience, and love that never fades.

Strength. Faith. Love.

09/05/2026

ALSCAS Heroes 💙 | Story 03

Continuing with another inspiring story from ALSCAS Heroes…

This is a story of resilience, creativity, and the courage to keep dreaming.

From childhood, Hardik was passionate about animation and worked hard to build a future in the creative world while completing his graduation. Life, however, took an unexpected turn when he was diagnosed with ALS. What began with weakness in his legs gradually affected his hands and everyday movements.

Currently, he is on a tracheostomy, yet his strength continues to shine through the smile in his eyes, reflecting courage, acceptance, and resilience.

Today, the support of his family and close friends keeps him going. He finds joy in writing scripts, reading, watching movies, and collecting action figures — holding on to the hope that one day his stories will reach the world.

Hardik’s journey reminds us that ALS may change life’s direction, but it can never take away dreams and hope.

💙 Story 03 | Resilience. Creativity. Hope.

06/05/2026

Introducing ALSCAS Heroes 💙 | ALS Awareness Month

Continuing with another inspiring story from ALSCAS Heroes…This is a story of courage, a brilliant mind, and a heart that remains a source of strength for his family.

Shrey Kapoor, a young dreamer, kind and grounded, deeply connected to his roots while reaching for the future. Surrounded by the love of his parents, grandparents, and extended family, his world was filled with warmth, laughter, and togetherness.

He dreamed of becoming a pilot while exploring the limitless possibilities of Artificial Intelligence, his mind full of curiosity, ambition, and vision. Whether on the basketball court or sharing moments with his cousins, Shrey embraced life with energy and joy.

In May 2023, at just 17, life took an unexpected turn with an ALS diagnosis linked to a FUS gene mutation. Yet, even in the face of immense challenges, Shrey showed extraordinary resilience, appearing for his Class 12 board exams in March 2024.

Today, while ALS has affected his mobility, it has not touched his spirit. With a tracheostomy and limited eye gaze, he continues to smile, quietly fighting, holding on to hope, and inspiring everyone around him.

His journey reminds us that strength is not just in movement, but in courage, hope, and the will to keep going.

💙 Story 02 | Courage. Strength. Hope.

03/05/2026

Introducing ALSCAS Heroes 💙

We begin this series by honouring a life that truly reflects strength, humility, and purpose.

Suresh Chowdary Yedru , a man who once found freedom on open roads, a passionate rider and cyclist who lived life in motion. Through every journey, his constant strength was the endless support of his better half, standing beside him with quiet love and belief.

In 2024, life took an unexpected turn with an ALS diagnosis. What felt like an ending slowly became a new way of living ,one shaped by courage, acceptance, and resilience.

Life did not stop… it changed its language.
From chasing roads to cherishing moments.
From speed to presence.
From fear to courage.

ALS may touch the body, but it can never take away the spirit.

As we begin the ALSCAS Heroes series, we honour stories like his—stories that remind us that while ALS changes life, it can never diminish the strength within.

💙 Story 01 | Strength. Courage. Hope.

01/05/2026

May is ALS Awareness Month 💙
A reminder that every voice matters, every story counts, and no one walks this journey alone.

A time to come together in awareness, compassion, and strength. This month, we reaffirm our commitment to stand alongside the ALS community, amplifying voices, sharing stories, and building understanding.

Throughout May, we’ll be honouring the Heroes of ALSCAS and bringing you our ALSCAS Knowledge Bytes .

Stay connected. Stay informed. Stay kind.

Walk with us in hope, empathy, and unity, because every story deserves to be seen, heard, and remembered. 💙

23/04/2026

We are excited to share our 2025 newsletter.

In 2025, ALSCAS expanded its peer-led support network to over 800 families, with 108 new families joining and more than 450 actively supported through 24×7 WhatsApp engagement, care services, and home ICU guidance. Awareness, advocacy, and collaboration grew through major programmes with AIIMS Delhi, participation in national events like IFNRCON, and global initiatives such as PACTALS. Marking 10 years, ALSCAS deepened research collaborations, expanded international partnerships, and strengthened community connections through state chapters and anniversary events.

Grateful for 10 years of trust and support, and for a journey we continue together, with hope and a shared purpose.
🔗https://alslifemanagement.weebly.com/newsletters.html

14/04/2026

Some platforms give you a microphone. Some experiences give you meaning.

At IFNRCON 2026, we came together not just to present ideas, but to share purpose.

Our session on evolving approaches in managing ALS/MND, presented by Satvinder and Vinit, highlighted how assistive technologies are transforming communication, mobility, and everyday care.

Importantly, one truth stood clear: care is sustained not by machines, but by human connection. Beyond technology, we have witnessed that rehabilitation is powered by compassion, resilience, and consistent support.

Grateful to Dr. Nirmal Surya for creating such a meaningful platform and for giving us the opportunity to contribute to this prestigious forum. Being able to share the patient support experience and see its value recognized in this space was truly special.

Thank you, Dr. Vineeth Jaison, for your constant guidance and support.

Thank you, Dr. Kunal. It was great meeting you, and we truly value your support and interest in contributing to the group.

Thank you, Dr. Partha S. Ray, for your encouragement and kind words.

It was wonderful connecting with Dr. Vidya Shenoy, Dr. Sonal Chitnis, Dr. Sharan Srinivasan, and Dr. Vijayalakshmi Subramaniam, and spending such meaningful time together.

And to every ALSCAS member walking this journey together, your presence is what makes ALSCAS what it is today,
Because in the end, no one should ever have to walk this path alone.

01/04/2026

“Powerful voices, impactful insights, and a shared commitment to making a difference in the ALS journey.”

28/03/2026

Proudly unveiling our very first ALSCAS Calendar 2026–2027 💚
This is not just a calendar — it’s an unfolding journey ✨
A journey that may be challenging, but never without hope.

Every artwork is created by ALS warriors, or by their family and friends, each piece reflecting a story of courage, love, and togetherness.

A heartfelt thank you to S. Narayana Rao (PALS) for connecting us to his cousin Sunita di, thank you Sunita di for helping us take this idea forward and through whom we were introduced to Andy, a designer, who brought these artworks together into a meaningful visual journey, entirely as a voluntary effort. ✨

ALS Care & Support, India

26/05/2026

19/05/2026

13/05/2026

09/05/2026

06/05/2026

03/05/2026

01/05/2026

23/04/2026

14/04/2026

01/04/2026

28/03/2026

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