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An exclusive chat with the "inspirational" Neeru Sharma, Board Member of the OI Foundation
Life is filled with complexities and adults get
challenged at various times with several personal, work and health related
problems. We have been granted one life span of over 60 working years, where, as
an adult we can choose and live life with values that have been entrusted by our
culture, upbringing and experience.
We have just one chance – to make it, live it or break it and extinguish it.
It is indeed a matter of pure grit and determination, that as an individual, you
oversee the limitations and challenges by focusing more on making a success out
of what you have and what you do. Someone close to me once said that no matter
what you are - a trucker, a doctor or an entrepreneur – be the best in that
profession. One such beautiful example of our Michigan Indian community is Neeru
Sharma.
Anu Gopalakrishnan speaks with Neeru
Sharma to showcase to the community that we are all instruments of god and we
are here for a purpose – to make a difference either to a friend, family
member, organization, or for one’s own soul! Neeru Sharma is affected by
Osteogenesis Imperfecta, a rare bone disease. Neeru is also the Board Member of
the OI Foundation. Some excerpts from the interview:
In common layman terms, what
is OI?
Osteogenesis Imperfecta causes brittle bones which break very easily. A cough or
sneeze can break a rib, and rolling over can break a leg. Throughout his or her
lifetime, a person with OI will have numerous or even hundreds of broken bones.
People with OI vary in physical size, and there is a wide variation in severity.
They may also experience early hearing loss, spinal curvature, brittle teeth,
and respiratory problems. There is no cure at this time. OI, which affects an
estimated 20,000 - 50,000 people in the United States, People with OI are
completely normal intellectually, mentally, and emotionally.
What is the OI Foundation all about?
People with OI can succeed in
school and the workplace, develop satisfying social and family relationships and
live independently. To pursue these goals, they face many challenges – limited
mobility, physical pain, societal prejudice, and architectural barriers. The OI
Foundation helps people with OI face the challenges of coping with OI so that
they can lead satisfying and successful lives. The Foundation's mission is to
improve the quality of life for people affected by OI through research to find
treatments and a cure, education, awareness, and mutual support. Today, many of
the people who serve on the board of directors and oversee the Foundation's
operation have OI themselves or are parents of children with OI.
How are you involved with this foundation?
I am on the board of directors
and have served 5 out of my 6 year term. I also have OI and can relate to
challenges our foundation works to solve.
What are the treatment options? How many are estimated to be suffering from OI?
Treatment is based on maintaining overall health including physical therapy.
Fracture management is using casts/braces/splints to help heal bones. Vitamins
and some drugs shown to improve bone density also are used. Finally most people
with OI will undergo surgery to correct broken bones or help in improving
mobility when necessary. Wheelchairs and walkers are used for those with more
severe cases.
What are the other issues faced by individuals suffering from OI apart from
physical immobility?
Hearing loss, brittle teeth and scolosis are common symptoms. Breathing issues
also may occur due to the scolosis. People with OI use wheelchairs/walkers to
overcome mobility challenges.
Tell us about yourself and how you cope with this challenge everyday?
I am 36 years old and
work for General Motors in our Global Program Management department in our
business process group. I have completed my MBA from Oakland University and BS
from Kettering University. I use an electric wheelchair and specially adapted
minivan for mobility and I am only 3 feet tall. However I drive my van, live in
my condo and live life quite normally. My family and friends help when needed
and I have traveled the world. My parents and brother are very supportive and we
are a close knit family. I do not think a medical condition makes me much
different from anyone else. Everyone in life has challenges – the key is being
mature enough to handle them. You may not be able to choose your circumstances
but if you work hard, stay positive, and develop yourself socially and
intellectually you can achieve your goals.
Neeru Sharma, a member of the OI Foundation Board of Directors, works for GM
Mobility, helping to make driving an accessible activity for all persons with
disabilities
What is the objective behind
the fundraiser?
The fundraiser serves to raise money for medical research. The OI Foundation
provides grants of money to doctors and researchers who are working on clinical
trials related to drug therapies which are used to reduce fractures. Medical
research also funds the OI Registry and the Linked Clinical Research Centers.
How has the response been from the Indian community to such a cause?
Not very good – few people have inquired about the event. The Indian community
needs to realize that this is a fun filled event and as Indians this is their
chance to give back to the community. General Motors is our corporate sponsor.
The Indian community needs to be more open minded toward people with
disabilities and realize we are people like everyone else. We have the same
abilities and desires and should not be treated like children or second class
citizens. We deserve the same respect and opportunities given to everyone else.
From your side, what kind of expectations do you have from the “Unbreakable
Spirit” fundraiser?
We hope to raise thousands of dollars for medical research and I am hoping at
least 200 people to attend. You can buy tickets at www.oif.org/MIDinner
We have all been molded by one
creator – with life, soul and energy. It is true that problems arise out of
various situations. But to face them and overcome them requires mighty grit and
a solid positive attitude without compromising your core values. Lack of
awareness and lack of funding with very little from the government has literally
been the cause behind the ignorance of OI among a lot of us. This attitude can
be changed by all of us as a community!
There are several individuals – children and adults who are like Neeru. True
to the theme of the event, they may be physically broken but the spirit is so
unbreakable. The OI Foundation and Miindia.com
strongly urges the community, voluntary organizations and medical practitioners
to come forward and provide support in terms of monetary aspects towards the
funding of OI medical research.
The “Unbreakable Spirit” dinner, sponsored by General Motors will comprise
of a Silent Auction, a comedy hypnotist and a musical gig (live rock band) by
Detroit’s very own Space Nelson. Dinner will also be served. Visit https://www.oif.org/
for more information. For the first OI “Unbreakable Spirit” fundraiser, click
here.
For feedback and questions, please email
us!
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