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| Annual Events
We carry out a number of annual activities, the most prominent
being the annual summer camp that our organization is being
conducting for the past ten years. These camps are held
at places near about Solan (HP) and each year a number of
MD patients from all across India attend this camp.
Other than these camps, we also organize small picnics
for patients of MD, but such activities are restricted given
the lack of Volunteers who can take upon themselves the
responsibility of organizing such recreational activities.
During the festive season and other local festivals we
organize stalls for selling greeting cards and other hand
made products of MD patients, so that it can act as an additional
source of income for them and allow them to lead a life
with dignity and self pride. |
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Chandigarh Fun Picinc
We had a camp at Chandigarh on 30th March 2008 at Museum and Art Gallery, Sector 10, Chandigarh. It was a great experience for all of us.
The day started by some breathing tips given by specialist doctors. They also gave some useful acupressure tips and some light exercises tips. Acupressure tip was a good one. He told us to do it for hands by holding a 'Mala', the one that we use for sacred purposes. However, the beeds of Mala were a little rough to give an effect of acupressure. Good thing is that you can hold it in your hands even while working.
After that, it was an introductions session where everybody introduced each other, followed by a session on jokes and songs where children and guardians shared some good jokes with us and sung some beautiful songs.
Then there was a session on Physiotherapy. A physiotherapist gave us a live demo of how to proceed with the physiotherapy of a child. He also told us different kinds of physiotherapy and cure for different types of MD.
Then there was a quiz which was focused on the general knowledge of the children as well as guardians.Then we had a delicious lunch.
After that, there were some small games for the children. Children enjoyed them a lot and adults recalled their childhood memories. Then we had musical chairs. It was divided into 3 rounds. First round for Moms of children, second for fathers' and third for their brother/sister and volunteers. Finally we had tea time followed by Antakshri where people were divided into two groups. It was a great fun for everybody and everybody sung very nice and melodious songs.
Some people from outside Chandigarh also joined the camp. A group of students also accompanied the camp from PEC (Punjab Engineering College) and PU (Punjab University). They really hosted the show very well and they organized most of the games and fun related part. Thanks to them and everybody for being the part of the camp.
We are highly thankful to Mr. Gurbir Singh Kochar our Chandigarh Chapter head who done all this arrangement for severely disabled children and for their parents. Some of them were come out first time from their home. |
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Delhi Fun Picnic
The Indian Association of Muscular Dystrophy organized two days Fun Picnic at Delhi from 1st to 2nd Feb 2008. All the credit goes to Virender Kalra our Delhi chapter head, who provide all types of amenities there and manage whole the picnic. It was perhaps the most accessible venue for persons affected with Muscular Dystrophy.
1. Yoga Session
Fun Picnic started with the Yoga session conducted by Mrs. Neelam Gupta all the participants were a team was there to help and give tips to the parents and attendants of the participants’. They were also educated about the alternative methods of treatments, such as yoga Pranayam, Energy healing and eating habits and proper yogic exercises.
2. Physiotherapy and Counseling Session
In this Fun Picnic Dr. Sumit Singh Genetic counselor from AIIMS News Delhi provided latest news on Research going on Stem Cells Therapy. Participant asked their queries from the Dr. Sumit Singh. All the participants took advantage of this opportunity.
3. Law related to Muscular Dystrophy
Mrs. Poonam Nataraj the Chairperson ‘National Trust’ addresses the gathering. She shows the light on what is the importance of National Trust and what all is National Trust.
4. Art Performance by Guru Syed Sallauddin Pasha Ji
Syed Sallauddin Pasha rejuvenates all the MD participants by his art performance. All the participants enjoyed the session conducted by the Guru Ji Pasha |
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Vodafone Delhi Half Marathon
IAMD participated in Delhi Vodafone Marathon on 28 Oct. 2007 with its 23 wheel chair participants. This was our first participation in this type of event. We could organize 200 people in all to run for the cause of Muscular Dystrophy.
The whole thing started up with a small pamphlet given to Sanjana by one of her relatives. This small beginning turned out to be a big event, in such a way that Mr. Virender Kalra our Delhi chapter head brought out 20 wheel chair users out of which around 10 people come out of there houses for the first time and a few had never come out on the roads in such a way. Other than this, our families, relatives, & friends joined us for the event. 54 children from a school Asha Deep joined us.
The run for wheel chair users was 2.5 Kms but for others it was 7.5Kms & one of the children ran 21Kms.complete half marathon. All the wheel chair participants & schoolchildren got certificates & our only 21 Kms half Marathon participant got a medal.
Procam promoted our mission of creating awareness of Muscular Dystrophy. Charu Malik our new member coordinated the event in Delhi. She not only organized funding for additional T-shirt requirement but also organized runners & promoted schoolchildren to come with us. If we had to give “Man of the Match” award for this event it would go to Charu Malik. It was not a simple job, distribution of kits, filling up of the forms.ETC .ETC. long live Charu Malik. |
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Chail Camp
The 15th All India Camp for Muscular Dystrophy participants organized by Indian Association of Muscular Dystrophy was held at HimNeel Cottage, Palace Hotel, at Chail. (H.P.) from 13th to 15th July 2007. One hundred and three participants from all parts of the country were registered. It is perhaps the most accessible venue for the physically challenged persons, nestled in the lap of Mother Nature, so congenial for healing and elevating the spirit.
Our trained volunteers warmly received all the participants –sufferers who reported with their attendants on 13th July 2007 .They were provided with all the information regarding their boarding and lodging and the details of the three days programme.
The days 13th July 2007 started with a lively and inspiring Satsang by the Art of Living devotees’ .A film sent by Swami Ram Dev ji. Patanjali Yog Peeth, Haridwar, especially made for Muscular Dystrophy participants, was also shown. There was an informal introduction session for the participants, which was followed by a talk on the “Latest Research in the field of Muscular Dystrophy” by Dr. Sumit Singh from AIIMS.
On July 14th the morning began with a meditation session conducted by one of Swami Ram Dev’s disciple,Yogaacarya Swami Ram Rattan ji, team was there to help and give tips to the parents and attendants of the participants’ .They were also educated about the alternative methods of treatment, such as Yoga, Pranayam, Energy healing and eating habits and mannerism. In addition, Vidya Prabhat Ranjan ji was there from Patanjali Yog Peeth Haridwar. Later there were especially tailored, thrilling games for them in which they participated with the help of their attendants and Counseling sessions for the participants and their parents by Occupational therapists, physiotherapists and Orthoptist engineers were organized.
In the second session, there were multimedia presentations on “Stem Cells therapy” by Dr. Sumit Singh from AIIMS. ,“Genetic Counseling” by Dr. Chandak from CCMB Hyderabad, and on “Muscular Dystrophy Management” by Dr. A.K. Aggarwal from Kanpur. All of them were extremely enlightening for all those who attended the camp, especially the parents and attendants of the participants. It was followed by the formal introduction of all the participants.
The July 15th morning was bright and Raja Virbhadra Singh JI, Hon’ble Chief Minister Himachal Pradesh and Rani Pratibha Singh Ji Hon’ble Member Parliament graced crisp as anticipated .The closing day function by their presence. They were deeply moved while meeting the participant-sufferers. The model of our dream project “Manav Mandir”,a residential training complex for the physically challenged persons, was also displayed in which they evinced keen interest and enquired about it’s details . The Hon’ble Chief Minister announced a grant of Rs.five lac to the organization and committed to give suitable land for locating the “Manav Mandir” complex. Sh. Mohan Chauhan IAS, The Deputy Commissioner Solan, Sh. Daljit Thakur IPS. S.P. Solan. The Deputy Commissioner, Dr. S. N. Sharma C.M.O. Solan, were there to give their blessings to the participants.
Shri. Murli Deora ji, Hon’ble Minister for Petroleum & Natural Gas, Govt. Of India donated one hundred quality Wheelchairs through the “Hope and Act”, foundation, Mumbai. The Indian Oil Corporation Ltd. sponsored the camp, besides many other donors and sponsors who came forward to help and aid the organization in this noble cause.
Another highlight of the camp was the meeting of the small children suffering from Muscular Dystrophy, studying in primary classes, who still have the whole life to fate, with the achievers on the wheelchairs who are doctors, engineers, chartered Accountants and big business men, and getting inspiration from them to stand on their own in society.
Such a rendezvous, even though once a year, where the physically challenged meet and interact with each others not only change their outlook and behaviors but also provide them with a strong motivation to face their challenge boldly and workout their karmic obligations cheerfully towards their evolution. Society also is touched and inspired with a feeling of oneness and desire for service. These camps have produced dedicated, young volunteers who are deeply sensitized. They are young schoolchildren, young teachers. They say: “Wherever we live we will never leave this social service”. |
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Nasik Camp
Introduction of IAMD
This all started with an inspiration from the work of a noted entertainer and great humanitarian Jerry Lewis and picked up in a real good way in our country by Dr. R. Janaradana Rao who established the Indian Association of Muscular Dystrophy (IAMD) in seventies Since first committing himself to the cause of muscular dystrophy affected persons in 1951, Jerry has single-handedly turned “muscular dystrophy” into a household term in the US and some other developed countries. As National Chairman of the Muscular Dystrophy Association in USA for some five decades, he leads the fight against more than 40 neuromuscular diseases with fierce determination in behalf of the more than 1 million Americans affected by these disorders. Jerry has won the admiration and respect of millions for his unstinting dedication to providing hope and help for a diverse cross section of people around the world – people of all ages, races and backgrounds – who live with muscle-wasting, often fatal, diseases.
Indian Association of Muscular Dystrophy (IAMD) is working with broad futuristic vision to provide all necessary services to muscular dystrophy affected persons in India. At present IAMD is emphasizing on awareness regarding various aspects of muscular dystrophy so as to save the affected persons from quacks and enable them have right kind of knowledge to manage the condition in better way. Depending upon support from various sections of the society IAMD will gradually begin service oriented programmes also.
Trimbakeshwar Camp
IAMD organized a three day All India Medical Camp in collaboration with Shri Ramakrishna Arogya Sansthan at Trimbakeshwar near Nasik in Maharasthra from 4th to 6th April, 2008. It was IAMD’s 16th annual camp. The camp aimed at providing medical consultation to the muscular dystrophy affected persons through renowned doctors who are working and involved in the latest scientific research in the field. Other allied activities such as one to one counseling to the affected individuals and their parents, interaction and sharing of experiences, legal information etc. were also important features of the camp. Overall arrangements for such a camp and the team of sensitized volunteers were the major issues making the camp smooth and successful. It was like mini India where participants came from different states to take benefit. To serve and provide various services to these participants the volunteers and specialists also came there from distant places in India. |
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A brief report on the activities of the camp is as under:
1.Registration
The camp begun at 10 a.m. with registration of the muscular dystrophy affected individuals who came to participate from various states viz. Himachal Pradesh, Delhi, Maharashtra, Gujrat, Madhya Pradesh etc. Total 75 muscular dystrophy affected persons got registered at the camp ranging from age of 4 years to 65 years. Out of these 75 persons, 54 were males and 21 were females. Apart from muscular dystrophy affected persons three parents of affected children also participated in the camp who could not bring their children for some reasons beyond control.
2.Arrangements
The camp arrangements were the key concern for IAMD. As stated above, total 75 muscular dystrophy affected individuals were participating in the camp and his /her attendant and parents that took the total to 194 accompanied each one. Therefore, lodging and boarding arrangements were required to be made for 250 persons including volunteers. These arrangements were made at the Gaganand Maharaj Sansthan at Trimbakeshwar. Each participant was allotted individual room with attached toilet with hot water facility. This required total 60 rooms. Temporary ramps were constructed to make each point wheelchair accessible through out the campus.
For programmes and consultation sessions, a hall with annex was arranged in the same campus.
Wheelchairs were made available for all participants and the same were carried in a truck when they went for outing on the concluding day. Two buses were arranged for this outing.
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3.Volunteers
One of the most important features of the camp was the team of sensitized volunteers present at every point all the time. On request of local partner, the IAMD Head Office in Solan (Himachal Pradesh) sent special team of 10 volunteers from there to take charge of various services at the camp. In addition, another team of volunteers was prepared from local school and they were trained and sensitized one day before commencement of the camp. They all rendered excellent services.
4.Introduction session
This was the most important session presided over by IAMD President Ms. Sanjana Goyal. It was for self-introduction by all muscular dystrophy affected participants. They were seated in circle and each one gave his/her 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 doctors, singers, computer professionals and even football champion.
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 programme 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.
5.Check up and consultation by AIIMS and CCMB doctors and researchers
Main feature of camp was medical check up of muscular dystrophy affected individuals by Dr. Sumit Singh, Neuro Surgeon and leading researcher on Stem Cell Therapy at AIIMS, New Delhi and Dr. G.R. Chandak, Scientist and Medical Geneticist at Centre for Cellular & Molecular Biology in Hyderabad.
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Dr. Sumit Singh rendered his services on 4th and 5th April and Dr. G.R. Chandak rendered his services on 5th April at the camp.
They examined participants and provided necessary guidance and counseling to them and their parents. Advised some of them to undergo latest medical diagnostic tests for confirmation of their disease and its type. Dr. Chandak collected blood samples of 25 participants, especially children, for DNA test.
6.Physiotherapy consultation
Due to lack of any cure for muscular dystrophy so far, the role of physiotherapy is most important for proper management of patients to prolong the progress of disease and to keep them healthy and active to the best possible level. For this reason a physiotherapist from Ahmedabad Dr. Kunal was invited who assessed all participants individually and gave very useful home advice to them and their parents. Dr. Kunal himself is suffering from visual impairment and looking him serving others gives courage and inspiration to all.
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7.Presentations on latest scientific research
On 5th April during pre-lunch session Dr. Sumit Singh delivered his lecture with the help of power point presentation to throw light upon progress of Stem Cell Therapy research and ray of hope for cure of muscular dystrophy by this emerging method. At present, this is the only ray of hope for treatment of muscular dystrophy, which is incurable so far all over the world. The session had open interaction in which MD affected individuals and their parents asked many questions to Dr. Singh.
On 5th evening, there was another very important lecture by Dr G.R. Chandak with the help of power point presentation on research on Genetics, its advancement and its role in prevention of muscular dystrophy. He emphasized that now this cruel disease can be prevented with the help of DNA test in case of particular types. The affected individuals’ DNA test, their family history and DNA test of probable carriers in the family can make it possible to assess the chances of disease in future babies and its prevention can be done by DNA test of fetus, fluid etc. This can break the cycle of occurrence of muscular dystrophy in the family and can prevent future occurrences. This session was also followed by effective interaction.
8.Session on Rights of Disabled Persons
On 4th afternoon a legal information session was addressed by Advocate Murtaza Chherawala and his associate Mr. Mihir S. Raje throwing light upon Persons with Disabilities Act 1995 with special emphasis on provisions on rights of disabled persons and their parents, their education and employment. The objective was to make them aware of their legal rights so as to enable them to get them implemented for equal opportunities, full participation and protection of their rights. Many good suggestions came out in the session. The lawyers replied to questions of the participants. Poor implementation of the provisions of the Act was the cause of main concern for the participants. Based on the suggestions made during the session the IAMD will send a document separately to the union government for necessary amendments in the Act and for effective implementation of the same.
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9.One-to-one counseling session
Just after beginning the registration at the camp one very important service was started that went on through out the camp period. It was one-to-one counseling to all participants and their parents. IAMD senior members Mr. Virendra Kalra, Mr. Ankur Dhir, Mr. Chirag Vasa and Mr. Subodh Joshi took these sessions. Despite being muscular dystrophy affected, all these members are doing something useful in life. They heard each participant and his/her parents patiently and provided important guidance and counseling. The aim was to let the sufferers share their pain and get useful motivation for positive living. 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. |
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10.Adapted games for the participants
Specially adapted games for the participants were organized for all age groups. This was an opportunity to remove feeling of hesitation and participate for enjoyment. This included many games like Chess, Throw Ball, and Color Identification & Playing Cards in which they participated on wheelchairs. Apart from games, they also exhibited their talents in singing, poetry etc.
The important aspect was that they all got the opportunity to participate and have fun. As different sessions like introduction, counseling, games etc. went on, the participants began feeling more friendly with each other and that led to more sharing.
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11.Yoga and meditation
On the evening of day one and morning of day two bhajan, meditation and yoga sessions were held with the help of representatives of Shri Ramakrishna Arogya Sansthan and Art of Living. Participants learned meditation and yoga techniques and themselves experienced how it helps in re-energizing mind and body after day’s tiring labour and 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.
12.Musical entertainment and wheelchair dance
It was first experience of its kind for many of them. No one was left alone and after initial hesitation, everyone fully enjoyed it. Volunteers and parents hold the hands of wheelchair bound participants and danced on the latest dance numbers.
Apart from above, during different sessions and free time, the participants were encouraged to sing, recite poems, tell jokes and share experiences.
13.Formal function
A formal function was held on day two at 4 p.m.. Mr. Naineshwar Rajurlkar, C.E.O., Zilla Parishad was the chief guest and Mr. Hemant Rathi, President Indian Chamber of Commerce Maharashtra and Mr. Janak Sharda, Director Dainik Deshdoot were the guests of honour. IAMD President Ms. Sanjana Goyal welcomed the guests and threw light upon the objective of the camp and Mr. Atul Goyal explained the journey of IAMD with the help of power point presentation before the guests.
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14.Journey of faith
The concluding day of the camp was marked with the participants’ journey of faith to Lord Trimbakeshwar Temple on wheelchairs from Gajanand Maharaj Sansthan. It was followed by their journey to Shirdi Sai Baba Temple by two buses and a truck carrying their wheelchairs. Shirdi is almost 130 kilometers away from Trimbakeshwar. Inspite of being over crowded due to Sunday and Gudi Padwa both temples provided special direct access to these physically challenged devotees on wheel chairs for which Shri Ramkrishna Arogya Sansthan made fruitful efforts in advance.
15.Special session for parents
On day one, a special session for parents of muscular dystrophy affected persons was held. IAMD President Ms. Sanjana Goyal chaired this session. The objective was to share the experience of journey of IAMD. Parents were motivated to make their children live independently, develop and keep their children active with positive attitude against all odds. Many parents shared their experiences, difficulties, success and views. This benefited other parents. Useful interaction also took place during the session. |
16.Special support
IAMD got special support and help for organizing this camp from kindhearted Swami Shri Kanthanada Ji and Swami Vishwarupananda ji. They worked hard for two months to prepare for the camp and drove 250 k.m. daily in surrounding areas to mobilize participation.
Ruchika Batra Parents Group also provided special support by circulating the message about the camp. This helped mobilizing participation.
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Muscular Dystrophy Association of Ahmedabad rendered services beyond words of praise. The trustees Dr. J.J. Mehta and Mr. Bharat Shah took the pains to bring 8 muscular dystrophy affected persons to the camp. They also brought one counselor Neela Ben and a physiotherapist Dr. Kunal, who is visually impaired, with the team. They all rendered remarkable service at the camp.
IAMD express special thanks to all of them and look forward to joint efforts for future programmes and projects. |
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CONCLUSION:
Generally Muscular Dystrophy affected persons are given wrong diagnosis, they remain indoors and in spite of having good brains they remain uneducated. Even after getting good employment opportunities, they cannot cope up with every day living difficulties. Camp is one such place where achievers meet the growing Muscular Dystrophy affected children who still have their lives to live with all these physical and consequential difficulties. In this, camp Mr. Hitender, came out of his house after eight years (in his family three members are affected with muscular dystrophy) from a village near Nashik, wanted a cure for the disease right there and then. However, on the third day he said that he is not thinking about the disease any more but wants to do something meaningful in life. In this camp, a correct diagnosis from the best doctors of the country gave them a feeling of dignity and the awareness that although there is no cure for the disease yet, still correct diagnosis for any possible future treatment is necessary. They could learn that they have to keep in good spirit and the best possible physical condition to be able to take benefit of that possible future treatment. This was a positive Transformation! The camp proved to be “Just a good place to live with a friendly atmosphere. Moreover, seeing other people in the same condition living happily and enjoying life has done wonders’’.
With limited financial resources at its disposal, the IAMD is doing reasonably well. We feel the need of launching service oriented programmes at the earliest. India is a country with huge population and diversities. Only a decade ago the first disability related law is introduced in India and disabled persons are still waiting for its effective implementation. Therefore, it is better that we ourselves start various necessary services and programmes for muscular dystrophy affected people in India rather than waiting for any miracle to happen.
IAMD solicits generous support from sensitized persons and organizations for achieving its objectives and creating such an infrastructure and atmosphere in the country that will make it a better living place for Muscular Dystrophy affected persons.
Dated: 18th April 2008 Sanjana Goyal
President
IAMD www.iamd.org
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