A rare spirit of a father, changing millions of strides!

It was a usual tiring Monday evening (2014), on way back home from work… looking at bright red lights of the slow moving traffic with my thumping fast music in car,  my phone rang an unknown number, I picked the call &  heard ‘Hi, I am Prasanna Shirol’ can I talk to you now Deepa? Good time? The next 40 min of the call I was moved and touched by how a love of a father to his daughter transcend hope & future to many.

Prasanna quit his years of career to support and attend his only cute daughter ‘Nidhi Shirol’, Nidhi suffers from a rarest genetic disorder called Pompe, she breaths through a support of portable ventilator and suction machine tugged behind her wheelchair. Sharadha aunty, her mother goes to her college everyday and both daughter & mother found ways to get things done when dad is away traveling. While the medical bills pilled to be on a ventilator 24 hrs, enzyme therapy which costs few lakhs and need Rs 1.5 crore annually, which they manage to get from sponsorship/charity.

For Prasanna and Sharada it has been a relentless fight to keep their precious one alive. I quote from one of the article published, “Why should we give up when she’s fighting? Every time she goes to hospital, she exercises and finds a nerve for the injection. She has never cribbed. Many people have told me that I am fighting nature. But when she wants to live, how can we sit back?”

Organization for Rare Diseases India (ORDI) was founded basis these exuberant journey Prasanna had gone through for his loving daughter. When talking to Prasanna one can never tell he is from Business Management background and has acquired depth of knowledge on genomics and biology of diseases just to start supporting Nidhi. In midst of leading Doctors and genomics scientist, Prasanna represents India in various conferences and meetings internationally to develop a strong network of international Parent and Rare disease groups. ORDI Officially launched  on February 18, 2014, their vision is to make rare diseases diagnosable and treatable just like other diseases such as diabetes, cancer etc. in India. ORDI identifies the grand challenges faced by the rare diseases community in India and is committed to systematically and holistically addressing those challenges.

I have known Prasanna for 2yrs now, on our first call he mentioned about the concept 7000 RARE DISEASES, 7000 PEOPLE RUNNING. Today I was part of the pride stride…,  ‘Race for 7’ kick started with huge supporters who ran 7000 meters from St Joseph high grounds to Cubbon park, every runners bib carried the name of the rare disease encouraging each one of them to spread awareness, to empower patients and their families. Matching strides with rare disease patients ensured they are not running a losing race but everyone coming together for winning strides.

I was diagnosed with rare neuro-muscular condition call ‘Spinal Muscular Atrophy’ (SMA), eating away my muscle strength gradually over the years  but what replaced every weakness was my parents dreams and support for me. I personally experience everything that my folks had to do from my childhood till date, my gratitude to them is every breath I take, every single day. I see the family of Shirol share the same strength and smiles as we do 🙂 living hopes for many such…

with Nidhi Shirol

with Nidhi Shirol

the bell rings with 1000's of supporter for 'Race for 7'

the bell rings with 1000’s of supporter for ‘Race for 7’

with Prasanna Shirol and Dr Meenakshi Bhatt, Consultant, Clinical Genetics

with Prasanna Shirol and Dr Meenakshi Bhatt, Consultant, Clinical Genetics

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Experiences that zoooooomed miles deep within!

When I zoomed into Vinayas Innovative Technology campus, the welcome reception wall carries vivid mural of banyan tree with thumb prints of employees branching with the company’s vision and mission statements. Mr. Narendra, Chairman of Vinayas said ‘’Deepa you will be accompanied by Ram for the site visit today and he is our best person handling the front office. Someone who never misses a single call at the reception. I heard a bright voice towards us ‘Hi Deepa Ma’am, Good Morning Nice to see you’. ‘I said ‘hello Ram, this is my first visit to Electronic Manufacturing unit and I’m  excited’… Ram quickly walked us through each department and was extremely sharp with introducing everyone with their accurate names, job roles. Some gave us big smiles and some were busy bent working on printed PCB boards, inserting capacitors., soldering etc. I got to interact with Supervisors of each dept who shared the work flow and met many of their employees with different types disabilities who were star performers employed in various high precision jobs. Ram Appaiah was among the 14 others with intellectual disability who were employed at various dept in the company.

Sitting in board room with Narendra I learnt a lot about his leadership, and his vision towards inclusion and how it all begin with his father being the inspiration. Today Vinaya’s has 12% of its total workforce of diverse employees, they are the role model in enabling person with mental disabilities, the healthy and happy employees are leading path to many manufacturing companies follow their inclusion trend around Mysore.

My favorite moment was when I gotto click picture with the awesome 14 and management team, beaming with bright smile & totally charged up I zoomed to my next stop…

‘Samartha 2016’ is an annual event by Rotary Mysore Midtown, were industrialist, NGO’s and voluntary organization come together in highlighting importance of inclusivity and recognition for role model  employers employing person with disabilities. I had chance to meet and interact with some enthusiastic and experienced Rotarian’s, the Club 15742 Dist 3180. Seated with the dignitaries I experience how Rotary Mysore Midtown was pioneering in several innovative and path breaking objectives in benchmarking projects benefitting the local communities, esp the initiatives taken to empower persons with intellectual disabilities has been diligent and outstanding.

I shared the stage with my Guru and mentor Shanti Raghavan …it was a moment of pride and emotions for me. As guest speaker, I took chance to highlight some of my learning as diversity lead and highlighted key diversity programs of EMC and our journey in this inclusion. The event concluded honoring Café Coffee Day and Emerald Jewelers for their outstanding work. During the networking dinner lots of parents and NGO’s shared their stories as to how these initiatives changed their lives for better and how some wanted opportunities who possessed BE, BTech qualifications.

The next day that’s the 20th of Feb, I was to visit a college and address 150 students, Zooming into the college campus I was lost in thoughts as to how I missed my college life with that the car halted to a big entrance that read ‘JSS POLYTECHNIC FOR DIFFERENTLY ABLED”.  The principal’s room had a photo of buildings inaugurated by Former Honorable Prime Minister Sri Atal Behari Vajpayee on 3 rd January 1999. The state-of-the-art facilities provided accessible infrastructure, canteen facility, hostel accommodation and offered 6 main diploma courses – Electronics And Communications Engineering, Computer Science And Engineering, Architecture, Commercial Practice, Computer Applications for VI, Jewellery Design And Manufacture Technology.

Mr. Shekar Nagaiah Principal was so humble to walk me around the college campus explaining individual dept and introducing to lectures and sign language teachers. The event gathered 150 final year students of CS, I could see these bright students who will change the future of India soon, and some gave a bright smile and welcomed me with sign language. I shared my journey on how I self-taught my subjects most of my college life and emphasized of self-employment/ entrepreneurship for students who wanted to create their own. I struggled 3yrs to find my job but I was busy being a freelancer back then building website and flash designs for institutes, small firms and NGO’s… a time when WWW consortium was on boom. I told everyone to dream big and never underdetermine oneself., we need such bright talent across corporates and will be happy to spread the word on JSSPDA students to my corporate network. I received huge silent applause when I said I will get my MD ‘Sarv Saravanan’ and my boss ‘Chandrashekar Krishnamurty’ address the students soon. I left the stage with best wishes to all the students and I shall will keep visiting them often.

All this lovely experience was made possible by my dearest uncle Bhanuchandaran, this visit made realize we have an awesome and humble human being, philanthropist amongst our family., I was deeply moved to hear from every Rotarian  and community talking so highly about uncle. Uncle is a strategic business consultant, SBC Consulting is led by him. Ex-President of Mysore Rotary’s award winning Rotarian and a very caring dad. I’m so thankful for him to invite tme to Samartha and JSS which brought about so much perceptive to my life and what I’ll be doing going forward, this experience has totally charged me up. Uncle surely won a heart of another daughter 🙂 Mysore will be close calls from now onwards.

Mural of banyan tree with thumb prints of employees

Mural of banyan tree with thumb prints of employees

Vinayas Innovative Technology happy employees.

Vinayas Innovative Technology happy employees.

My favorite photo, Ram stands towards the right end corner.

My favorite photo, Ram stands towards the right end corner.

With 150 final year students of JSSPDA CS.

With 150 final year students of JSSPDA CS.

with my dearest uncle Bhanuchandaran

with my dearest uncle Bhanuchandaran

Media publications about SAMARTHA 2016

Media publications about SAMARTHA 2016

n my first ride and all the zoom zoom in ZoomCar

n my first ride and all the zoom zoom in ZoomCar

Step forward to Inclusive India!

What happens when we are totally aware of the geographic/community/environment we operate? We definitely become sensitive and responsible to many aspects of our eco-system and we’ve seen how education, politics, industries, science, technology, communities and individuals bring disruptive patterns with this awareness.

Over few years we all have evolved certainly to larger extend of positive and meaningful disruption to mankind. Like there many things we can talk about from humanized robot to our very critical Skill India campaign that needs momentum but today I’m gonna talk about CSR (corporate social responsibility)

CSR by definition that every company is responsible towards its community and environment. CSR has been gaining lots of wins in societal awareness, changing lives of many. Lik my company, EMC has made CSR strategy a primary focus, for ex one of our main focus area is education, the school adoption program has enabled thousands of rural students to get access to: classrooms to study, computer lab, mobile science lab, clean restrooms and drinking water facility and this has opened meaningful volunteering opportunity to EMC employees where they actively involved in bringing about these initiatives and being responsible. 1.4 million children aged 6-14 remain out of school in India, means we still have long way to go.

Likewise I was guest speaker of ‘1 Step’ an L&T Infotech CSR launch event partnering with Seva-in Action (SiA), organized a Special Quiz exclusively for children with disabilities this  Saturday. Seated with the audience I was blown away by the talent showcased by these kids, Quizabled 2016 set an amazing platform to these children with intellectual disabilities, autism, hearing and visual impairment in quizzing and broke the myths around children with intellectual disabilities. Their smartness, quick responses and knowledge defined their strong ability. Ruma Banerjee chair of SiA said apart from the 30 schools, the parents of many took active involvement in participation of their children, with 160 participants. Discussing with Venkataraman, Head of Global Business Operations., L&T Infotech highlighted their key program on remote class room training they conducted digitally to rural school, such program basis technology plays a great enabler. Kudos to Vinod CSR Lead L&T and 90 + Volunteers 20 rep from Seva in action,3 quiz masters pulling together a meaningful initiative, hope this goes into annual calendar and more joining hands for Quizable.

When I rewind time, I started work 8 years back,. being a women and in a wheelchair… I felt I was the only person so unique and different zooming around the corridors of my office, …I was quickly identified even in crowd of 1000 people, I was watched… sometimes stared, some questioned what made me strong, why I choose to work or rather how I gain experience to work, one person even told me he has lot of questions to ask about my smile & will J

Today we are mainstream, we all are players in this inclusion and unique prospects.

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