SPONSORED BY BANSAL CLASSES PVT. LIMITED, KOTA
WHAT IS MUSCULAR DYSTROPHY? (MD)
(IN BRIEF)
Muscular dystrophy (MD) is a progressive muscle wasting disorder which leads to
total dependency of the affected individual. Nine diseases including Duchenne,
Becker,
limb
girdle,
congenital,
facioscapulohumeral,
Myotonic,
oculopharyngeal, distal, Spinal muscular atrophy and Emery-Dreifuss are
always classified as muscular dystrophy, but there are more than 100 diseases
in total with similarities to Muscular Dystrophy.
Introduction of IAMD
IAMD stands for those, who are affected with Muscular Dystrophy (MD) and severe
disabilities. It is an organization, which is run by muscular dystrophy affected
persons,
(wheel chair bound) families & friends. IAMD takes up various projects like:1. JAGRITI
2. WINGS
3. SATHI
4. SAHARA
5. GURUKUL
6. PUNARUTTHAN
7. PUNARSANJEEVAN
8. SAMPARK
9. NIDAAN
These projects are oriented towards rehabilitation and correct diagnosis.
IAMD organized 20th National Medical awareness camp on 5th & 6th April 2009 in
Jaipur. The camp was focused on providing medical awareness, latest update about
the treatment and prevention. The best doctors working for the cause and cure of
Muscular Dystrophy were available. Programme was inaugurated by Sh. V. K. Bansal
(CMD Bansal Classes) and Sh. S. S. Bhandari renowned Chartered Accountant &
Philanthropist. Counseling of the families, affected individuals and care givers was
done. Bhajan Sandhya, variety entertainment programmes, Games and introduction
session were the main features of the camp. Free wheelchairs were also distributed
to the needy.
Venue
The Venue of Camp was Maheshwari Samaj
Bhawan, “Utsav”, Jaipur.
It is beautifully surrounded by mountains in a
posh locality having a luxurious
facilities for
centrally AC accommodation and Conference Hall.
UTSAV
Camp started on 5th April, 2009 (Sunday) at 6 AM with the
individuals who came from all over the region. Dr. Rajiv
Goyal,& Mona Bansal(themselves affected with MD) were
on the Registration Counter. It was set up in the front
corridor of the main hall..
Dr. Rajiv Goyal on
Registration Counter
Formal Function
Ms. Nistha Thakkar, Clerical Assistant (MBA, Post
Graduation Diploma in Human Resource Management). She
is a vibrant and intelligent girl. Being on the wheelchair has
never depressed her in any way inspite of her being very
busy with her job, she takes full initiative in all the
activities of IAMD. She compered all the sessions of Jaipur
Camp flawlessly.
Ms. Nistha
The inauguration of the Formal
function was done by Mr. V. K.
Bansal being the Chief Guest and
Mr. S. S. Bhandari being the Guest
of Honour. A presentation of the
journey of Indian Assn.
Mr. Atul Goyal
Anticlockwise Ms. Sanjana, (President IAMD)
Mr. V.K.Bansal, (CMD Bansal Classes)
Mr.S.S.Bhandari (CA)
of Muscular Dystrophy, since 1992 till 2009
was made by Atul Goyal. Mr. Virender Kalra,
Ms. Seema Somani, Ms. Deepti Dash & Ms.
Pooja Arora they shared their experiences of
“how attending the camp has changed their
lives”. It then had First inaugural session of
the Chief Guest Mr. V.K Bansal, CMD of
Bansal Classes, Kota, who himself is affected
with Muscular Dystrophy. The success story
of Mr. V.K. Bansal seems something like a
miracle. A will to survive made him a teacher.
And his Courage, Determination and Vision
changed the course of fate & gave him a new
lease of life.
The Guest of Honour was renowned
Chartered Accountant Mr. S. S. Bhandari.
He not only committed to be always there
for the cause, but encouraged the
participants by his motivating words. He
spoke about the role of Yoga & Pranayama,
Mental Power of a human being, and
insisted that persons with disabilities
should be visible in the society, and should
ask for their demands from
the
Government.
An inspirational song by IAMD members
was presented
Mr. Rajesh Deedwania Chartered Accountant
M.COM,F.C.A.,DISA(ICA),
MEMBER
GARP(USA)was
the main
organizer of the camp. Muscular Dystrophy
never affected his positive attitude towards
life. This lead him to achieve highest in
educational qualifications. Now he is a
successful practicing Chartered Accountant
since last 20 years.
AFFLIATE
Mr. S. S. Bhandari CA (Guest of Honour) &
Mr. Rajesh Deedwania CA
(Main Organiser of the Camp)
MIFC,CFC(CANADA),CISA(USA).
Medical Counseling
The camp was taken forward with the presentation from Dr. Achal Srivastava
from AIIMS . It was about latest in the stem cells and research of muscular
dystrophy. He guided the patients to visit AIIMS for complete & correct
diagnosis.
Dr. Chandak delivered his lecture with
the help of power point presentation
to
throw
light
upon
genetic
counseling. The session had open
interaction
with
MD
affected
individuals and their parents. Many
misconceptions were ruled out.
Dr. G. R. Chandak
Scientist & Medical Geneticist
from CCMD Hyderabad
Dr. Lukshmi was great in getting the
samples of blood for DNA test of DMD
patients for the analysis. Also she took
a session on what is Duchenne
muscular Dystrophy and what are the
Global standards of testing.
Dr. Madhu from Kota and a team of
Physiotherapists from SMS Medical
College, Jaipur guided and counseled
each and every participants. Physiotherapy is most
important for proper management of the disease, to prolong
the progression of MD and to keep the individuals healthy
and active to the best possible level. Students of SMS
Medical College were there for complete two days.
Dr. Mrinal Joshi spoke about complete rehabilitation which
included rehabilitation medicine, clinical psychology, speech
occupational therapy and orthotics.
Dr.Achal Srivastav
Prof. Deptt. Of Neurology
AIIMS New Delhi
Dr.B.R.Lakshmi
Project head and Research
coordinator, Molecular Diagnostic
Facility,
Sundaram
Medical
foundation, Chennai
Dr. Mrinal Joshi
Bhajan Sandhya
Consultant
Musculoskeletal
Medicine
A/Prof. Dept of Physical
Medicine & Rehabilitation
SMS Medical
College
&
Associated Hosp. Jaipur
A beautiful experience came in for all the participants in the form of Bhajan
Sandhya. A group of trained and devoted artists lead by Dr. Prakash Chablani
presented this melodious program to the participants. Everybody enjoyed the
evening. It made the entire environment charged with high spirit.
Yoga and Meditation
On
the
morning of second day the
Meditation and Yoga sessions were held
with the help of “The Art Of Living”
organization Ms. Aparna with help of Mr.
Sudhir gave the guidance of breathing
exercises. Participants learnt meditation
and yoga techniques and experienced how
it helps in re-energizing mind and body
after day’s fatigue, how it gives energy
for the whole day’s work. After practice
session, they felt re-energized and peaceful
within. They were also explained how these
techniques help improving peace, health
and happiness.
Giving introduction and sharing his
Ambitions and Dream
Yoga practice for better life
Introduction Session
That was most important session presided
over by Ms. Nistha Thakkar. It was for selfintroduction by all Muscular Dystrophy
affected participants. They gave their
introduction followed by interaction. It was
interesting to know ambitions of children,
who freely expressed what they want to
become in life. Their ambitions show that
the disease has not affected their spirit, as
they want to become Engineers, Doctor,
Singers, Computer Professions,
Cricketer and even football champions. Also it was highly motivating for small
children and for the ones who have left formal education for some reasons or the
other, to see achievers like doctor, chartered accountant, engineer, college
lecturer, professionals & businessmen, amongst them.
An important fact revealed in this session
was that some of the participants came out
of their homes after years and for the first
time got the opportunity to be in such a
program to know and share about their own
disability. Children were especially motivated
for proper education and educated young
participants were motivated to live life
meaningfully by way of using their
qualification and talents.
Participants and their parents got
valuable inspiration from lives of
some muscular dystrophy affected
individuals present there. All were
suggested for proper management
and active living with positive
attitude.
Motivation for children to something in life
Musical entertainment and wheelchair dance
All necessary arrangements of entertainment were there. A
Musical System was arranged. All participants along with their
parents and volunteers had great fun by doing wheel chair
dance on DJ Music. No one was left alone and after initial
hesitation,
everyone
fully
enjoyed it Volunteers, Doctors
and parents held the hands of
wheelchair bound participants
and danced with joy. Apart
from above, during different
sessions
and
free
time,
participants were encouraged
to sing, recite poems, share
experiences and tell jokes
One to one
A Doctor dancing with
Participant
counselling sessions
Despite being Muscular Dystrophy affected, all the senior
members are doing something useful in life. They heard each
participant
and his/her parents patiently and provided
important guidance and counseling. This included Neela Ben,
a Psychologist from Gujarat, Mr. Chirag Vassa a businessman,
Mr. Bipan Kaushal a Lecturer in Punjab Engineering College
Chandigarh, Mr. Rajesh Deedwania a Chartered Accountant
from Jaipur, Mr. Virender Kalra Canara Bank Manager from
New Delhi, Mr. Sumit Mehta Software Developer from
Panchkula.
Mrs.Neela Ben
Volunteers
Ms. Pooja Rana is a homeopathic doctor associated with
IAMD since last 7yrs Though she was busy with her
internship, still she came all the way from chandigarh to
be there as a volunteer for the camp. She met & made
friends with each and every person.
Mr. Krishna Anand & Mr. Yunus both of them came from
Ahmedabad , as a volunteer for the camp. They were real
big support.
Motivating and Encouraging people
The aim of this session was to motivate and encourage others that others should
share their pains and gains, Children were inspired for proper education and young
ones were motivated to keep positive attitude and do something meaningful in life.
All were provided relevant information. This led to further informal personal sharing
and consultation.
Session on Law
A complete section on law related with the legal
rights and privileges for the disabled was
organization. It was hosted by Mr. Ravi Bhushan.
A good amount of awareness regarding legal
issues was passed on to the participants and many
guardians/parents and participants came up with
different queries. It was an informative session for
the participants and proved quite important for
the general awareness of parents as well as their
patients.
Mr. Ravi Bhushan,
Member HRLN,
Games
One of the good part of this camp was the good
arrangement of Kathputali Dance for the children
while their parents attend the camp. Special
Puppet show, Animation film and Carom was also
arranged and children enjoyed it a lot. In puppet
show they learnt some important lesson of life with
fun. In some of games, children got the Prizes.
Piyush Bhai Visits the Camp
Children Enjoying Carem
Piyush Bhai the owner of Wagh Bakri Tea Group
personally made it possible to be there at the end of
the camp. Inspite of his being pre occupied with his
personal/business engagements. It was highly
encouraging for the organisers. He arranged Mr.
Atul Goyal interview with “Rajasthan Patrika” a
leading New Paper, which was published the next
day.
Site Seeing
Participants had a Sight-seeing at Jaipur. Buses
were arranged for that and the participants has
seen Amber Fort, Birla Auditorium, Birla Temple,
Vidhan Sabha, Hawa Mahal and Old City. It was a
wonderful experience for everybody to visit Pink
City, Jaipur.
Conclusion
Jaipur Camp on muscular Dystrophy
(A Parent Perspective)
Frankly, it was my finest and best experience as far as some real contribution
towards the cause of making people aware about the Muscular Dystrophy is
concerned - both the sufferers as well as bringing the rest of the society on board
about a silent killer disease that can affect anyone in the world. The camp was just
the perfect .. but it carried the human touch and the warmth of everyone around
and a big loud message .. that those affected with MD are not alone .. and so many
people are with them and behind them to make their lives as lovely and beautiful
as it can be for any non-sufferer .. and everyone enjoyed to the fullest !!! it was
just great !!!
Special Thanks to :-
Mr. V.K. Bansal
Dr. Chandak
Piyush Bhai
Dr. Mrinal Joshi
Team of
Physiotherapists
Mr. Pawan
Dr. Achal Srivastav
Mr. Yunus
Ms. Baldi
(Senior)
Ms. Uma Baldil
Ms. Urmil
Ms. Aparna
Mr. Manish
Ms. Pooja
Mr. Ashish
Mr. Prakash
Dr. Laxmi
Dr. Prakash
Chablani
Dr. Madhu
Mr. Manish
Mr. Boby Anand
Ms. Alpana
Mr. S. S. Bhandari
Mr. Swami
Ms. Aarthi
Ms. Anpurna
Ms. Nirmala
Mr. Khilimal JainChief Commissioner Disabilities Rajasthan: Inspite of his being very busy he made it
possible to attend the camp.
Mahavir Viklang Samiti, for making wheelchairs available for the camp
Umang, for providing an accessible bus available for pick-ups and site seeing.
Calldi and abco surgical wheel chairs for demonstrating the powered wheel chairs.
Mr. Manoj Aggarwal, for making extra efforts to bring Muscular Dystrophy affected persons to
the Camp from Jhuggis of Jaipur.
Mr. Ravi Hooja, for spreading the message of the camp.
Last but not the least: Mr. Arun Lohiya, for making perfect food arrangements.
Our heartiest Thanks to Rajasthan Partika & Dainik Bhaskar which covered the message of camp time
to time.