Volunteers

Shital Bhatkar – Volunteer, Mumbai

Shital Bhatkar a momprenuer all the way. Mother to a beautiful girl and a son. Her son Aarya, suffered from a rare disease niemann pick and succumed to the disease 5 yrs back. Her struggle with the disease led her to start an NGO “Withaarya” in 2010. The idea was to create an awareness and help patients suffering from lysosomol rare disease. Withaarya is based out of mumbai and is connected to the patients admitted at KEM Hospital.

Withaarya expanded further and now serves meal daily to 300 patients and their caregivers outside KEM Hospital.

The NGO also provides medical assistance monetarily.

Jaya Srivastav – Gujarat Coordinator

You can never leave footprints that last if you are walking on tiptoes!” ~Leymah Gbowee

I spent a great part of my life tip-toeing, but always carried a strong desire to create an impact by making the difference.

28 years spent as an employee in the corporate world, I finally made the first imprint when I left the comfort zone and chose to be a freelance trainer, influencing and making a difference in young professionals’ life. Armed with my skill sets, rich experience I stepped up my game – from being a player, I decided to be the coach and guide drawing from diverse work experience in the service industry, & strong people skills!

And then a chance meeting with a Rare warrior in 2016, when i didn’t understand or wasn’t even fully aware of the R of Rare, led to the next imprint by being connected with ORDI. This chance meeting developed with baby steps which manifested in execution of the first Racefor7 in Gujarat state!

I was fortunate to have several ex-colleagues, friends and family believe & join in the cause! The first event was a success with 400+ registrations and we are going from strength to strength and hoping to create many more footprints leaving a permanent impact and improve awareness and quality of life for our Rare Warriors!

Ms. Sushma Patil

Ms. Sushma Patil is a level II certified Genetic Counselor by Board of Genetic Counselors India (BGC). She has more than five years of experience. Her passion for being of service to the society along with scientific interest in genetics inspired her to pursue a career in Genetic Counseling. Continuing her interest in creating awareness regarding application of genetics has led her to cater to genetic counseling requirements not only in cities like Mumbai and Pune but also to smaller cities like Nashik and Aurangabad.

Education:

PG certificate course in Medical and Genetic Counseling, Kamineni Education Trust, Hyderabad (2013- 2014)
Master of Science, Biomedical Genetics, VIT University, India (2011-2013)

https://www.eta-i.org/tramadol.html

working with visually impaired people.

She has a banking background with a master’s degree in commerce.

Ramgopal Vallath, RD Volunteer – CIPD (Chronic Inflammatory Demyelinating Polyneuropathy)

ramgopalvalanth RamgopalVallath or RamG as he is known is the head of publishing at AzimPremji Foundation. He also works part time in an exciting start up– Zentron Labs, in the machine vision space.

RamG believes he is the most positive person he has ever met in his life.

After completing his B Tech from IIT Chennai and his PGDBM from XLRI, RamG dived into his corporate career with gusto. He had a very successful stint and became one of the youngest COOs in the Telecom Industry at 35. He went on to become Director Operations for HP India.

Unfortunately he was afflicted with an autoimmune disorder at the age of 33. This progressively weakened his nerves and muscles till he found even day to day tasks difficult to perform. Not one to give up, he searched out a potential cure for himself – a clinical trial in Chicago.

While undergoing the treatment, infused with chemo and a mix of rabbit and rat extracts, an idea for writing a series of funny wacky books came to him. He wrote his first book using a voice to text software, since he was unable to use his hands to type.

Today, RamG has recovered most of his strength; he is a successful published author and a motivational speaker. He is mentoring start-ups, works part time in a start-up and is a full time learner of sciences. His aim in life is to become the most prolific science author in the world and also to touch as many lives positively as he can.

Parul Jauhari – Delhi

new Parul Jauhari is a Post Graduate in Biotechnology who has also worked in the social sector. As a teacher in Teach For India, she has been actively involved as a counsellor and change-maker for families from the economically weaker section. Blessed with a penchant for gathering knowledge about anything and everything in the universe, her interests range from psychology to art to adventure sports.
Her love for writing brought her to ORDI where she seeks to share the stories of people with rare diseases, including her own, with the world. Her objective is to garner support for them by dissemination of information and generation of awareness towards their cause.