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 IAMDIAMD stands for those, who are affected with Muscular Dystrophy (MD)

and severedisabilities. 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. PUNARSANJEEVAN8. 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. VenueThe 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.

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..

UTSAV

SPONSORED BY BANSAL CLASSES PVT. LIMITED, KOTA

Dr. Rajiv Goyal on Registration Counter

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.

Anticlockwise Ms. Sanjana, (President IAMD) Mr. V.K.Bansal, (CMD Bansal Classes)

Mr.S.S.Bhandari (CA)

“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.

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

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), MIFC,CFC(CANADA),CISA(USA). AFFLIATE 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.

Mr. Atul Goyal

Mr. S. S. Bhandari CA (Guest of Honour) & Mr. Rajesh Deedwania CA

(Main Organiser of the Camp)

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.

Formal Function

Ms. Nistha

Bhajan Sandhya

Dr. Mrinal Joshi Consultant Musculoskeletal MedicineA/Prof. Dept of Physical Medicine & RehabilitationSMS Medical College & Associated Hosp. Jaipur

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.

Medical Counseling

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.Achal Srivastav Prof. Deptt. Of Neurology AIIMS New DelhiDr. 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

Dr.B.R.LakshmiProject head and Research coordinator, Molecular Diagnostic Facility, Sundaram Medical foundation, Chennai

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.

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.

Yoga and MeditationOn 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.

Introduction SessionThat was most important session presided over by Ms. Nistha Thakkar. It was for self-introduction 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,

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.

Yoga practice for better life

Giving introduction and sharing his Ambitions and Dream

Motivation for children to something in life

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.

Musical entertainment and wheelchair danceAll 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 initialhesitation, 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

A Doctor dancing withParticipant

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.

One to one counselling sessions

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.

Mrs.Neela Ben

Motivating and Encouraging people

VolunteersMs. 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.

Session on LawA 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.

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.

Games

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.

Site Seeing

ConclusionJaipur Camp on muscular Dystrophy (A Parent Perspective)

Piyush Bhai Visits the CampPiyush 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.

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 !!!

Mr. Ravi Bhushan, Member HRLN,

Children Enjoying Carem

Special Thanks to :-

Mr. V.K. Bansal Mr. S. S. BhandariMs. Uma Baldil

Ms. Urmil

Mr. Ashish

Ms. NirmalaMs. Anpurna

Dr. Laxmi

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.

Dr. ChandakDr. Mrinal Joshi

Dr. Achal Srivastav Mr. Prakash

Team of Physiotherapists Dr. Madhu

Dr. Prakash Chablani

Ms. Aparna

Mr. Pawan Mr. ManishMr. Manish Mr. Swami

Mr. Boby AnandMs. Pooja

Mr. YunusMs. Aarthi

Ms. Baldi (Senior)

Ms. Alpana

Piyush Bhai