Where there is a will, there is a ‘Champion’.

Symptoms of rare diseases often creep up quietly, rather than arriving with the brutal shock of a sudden lifestyle upheaval. The change is gradual—unyielding and relentless in its impact. One moment, I was darting around the globe, making things happen with agility and speed; the next, it felt as though someone had chained a 1 kg weight to my ankle. I could still keep pace, but every step felt heavier. Day after day, the burden grew incrementally—doggedly accumulating, until one day, it was impossible to ignore.

Six years later, I bought my first wheelchair.

I live with a rare genetic muscle disorder known as GNE Myopathy. There is currently no cure or available treatment, though research is ongoing, with the potential for breakthroughs increasing as awareness and focus intensify.

The greatest challenge for people living with rare disorders—and their families—is that these conditions are almost always misdiagnosed. It can take up to ten years to receive an accurate diagnosis, by which point, for many, the effects are so debilitating that options for intervention are all but exhausted.

Misdiagnosis becomes a recurring theme —one detour after another. My symptoms first emerged while I was at university, far from home, and early guesses ranged from malnutrition to hormonal shifts. Only when one attentive doctor recognised a deeper issue did a gruelling medical journey begin: endless blood tests, powerful drugs, muscle biopsies, and ever-escalating treatment misdiagnosis become a recurring theme. Desperate for answers, my family and I left no stone unturned, searching worldwide and trying everything from mainstream medicine to Homeopathy, energy healing, Ayurveda, IVIG, and even Stem Cell therapy.

We were haunted by questions: Why wasn’t the medication working? Was the correct diagnosis even possible? What did the future hold? Amidst all the chaos and uncertainty, I found a job—an opportunity that became the cornerstone of my career. The company was laying the groundwork to embrace the burgeoning world of outsourcing, expanding rapidly and seeking individuals to help accelerate its growth.

Despite this ambitious environment, I was never unreasonably challenged. The organisation was aware of my progressive disorder, which naturally slowed my pace, but instead of being deterred, they found innovative ways to harness my strengths and abilities. We underestimate the power of support and cascading effect of people who are willing to support. They are your champions. And when put in context, these champions are a supernova of hope.

Champions of Possibilities

The organisation allowed me to open doors I never thought possible. I began as a trainee customer service agent and journeyed through the world of business development. From there, I transitioned to strategic projects within the services portfolio, contributed to company expansion, and even became involved in mergers and acquisitions. I kept opening the doors, and the organisation didn’t stop me. If one recognises their own potential, they can aspire to reach the skies. Yet, when those around them actively create space for that potential to flourish, the possibilities become limitless – one can aim for the stratosphere.

Champions creating champions – Technology

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“Necessity is the mother of invention” – Plato

“Adversity is the greatest motivator to use that invention”– Shubhra Sinha

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I couldn’t make it through a single minute of my day without the technology I rely on. It began with the ‘Windows virtual keyboard’ as a replacement for a physical one. Then came training ‘Dragon voice recognition’ software for speech-to-text; next was combining both tools to write emails, craft presentations, and update financial models in Excel. The Plantronics headset allowed me to answer calls using voice commands—the only solution that worked seamlessly with my iPhone a decade ago. Five years ago, AirPods revolutionised voice command technology, enhancing compatibility and convenience. However, the technology that truly changed my life emerged from the world of gaming. Eye tracker technology from Tobii Dynavox—originally designed for gamers to lock onto their targets—brought a virtual keyboard and full compatibility with Windows 10/11. For the past six years, I’ve been ‘rolling my eyes’ to stay productive and efficient.

AI has turbo charged the ability to improve and evolve. M365 Copilot has quickened the pace of research, information access, content production and create agentic experiences, which has accelerated knowledge horizons. At the heart of it all, my tech tools bridge the gap between independence and physical dependence in daily life. Tragically, a vast chasm remains—the affordability of these life-changing devices for those who need them most.

Champions in Allyship

Fostering allies within the workspace is crucial and it doesn’t come easy. My colleagues learned to adapt to my circumstances—some did so instinctively, while others grew into it over time. This evolution required patience and perseverance, but ultimately, it was achieved. The effort required to build trust within an organisation must not be underestimated, especially for individuals facing unique challenges. I had to make a concerted effort to ensure my voice was heard and my presence recognised. Naturally, there were detractors along the way, some more resolute in their opposition than others.

But they didn’t distract the attention from majority of my colleagues, who have been steadfast supporters and strong advocates. My allies created a safe space that fuelled my desire to take risks, respected difference in opinions and made my voice feel heard. These champions ignited my spirit and compelled me to strive for more.

Champions called WWGM

In a world where genetic disorders are misdiagnosed until genetic testing intervenes, WWGM stands out as the only non-profit organisation capable of leveraging advanced genetic testing technologies and making them accessible in India. Their unwavering commitment to ending the relentless cycle of medical uncertainty has transformed countless lives, mine included. Suddenly, the fog lifted with my genetic testing results—I finally received a definitive diagnosis and, as a result, could chart a path towards the best possible quality of life.

Yet, this progress comes at a cost. There is a constant need for sustained research to pursue a cure—a process that remains painstakingly slow. Collaboration among top medical and scientific minds is indispensable. Crucially, there is a persistent need to raise awareness about the significance of genetic testing so that individuals understand the steps necessary to halt the rapid progression of their conditions. Above all, we must provide access to essential tools and technologies, empowering individuals to become equal contributors to a nation’s GDP.

I wouldn’t be able to tell the difference - whether I found my champions, or my champions found me. Either way, the path that I tread wouldn’t have existed without them.

But, I do realise that not everyone gets access to champions easily.

Persistent challenges remain in breaking through existing barriers and invokes thought-provoking questions -

·      What small, deliberate step can we take today to help build a workplace where growth opportunities are a function of potential, not limitation?

·    Could embracing inclusivity at every management level unlock hidden potential and create greater accountability within organisations?

·    What invisible glass ceilings still exist in organisations, and how many persist simply because we’ve learned not to question them?

·      With accessibility being key factor in product development today, how can organisations bring in more innovative technologies as equalizers?

·     How can we make assistive technology devices genuinely affordable for all—should we focus on reducing costs at the source, or is there a more sustainable solution in building comprehensive financial support systems?

·      Are we aware of the opportunities for allyship that quietly pass us by?

·      How often do we confuse good intentions with real allyship?

How can we create champions? How can WE BE CHAMPIONS?

The challenges we face are not insurmountable. With collective intent, we can bring together most of the missing pieces. Let us aspire to mobilize more champions—and, in doing so, become champions ourselves.

Credits: Article made possible with credit to Tobii Dynavox, O365 in-built microphone, M365 Copilot. Article reviewed and collaborated for publishing, by a human champion and close friend.

About the Author: Shubhra Sinha  is an Associate Vice President at a technology services organisation. She leads technology partnerships for Europe and APAC regions of her organisation and is passionate about using AI and technology to alleviate everyday challenges, creating practices for responsible use. In her daily life, she adopts practices that reduce energy and food waste and builds personal goals to harness energy.