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DISTT. INSTITUTE OF EDUCATIONAL TRAINING SSA in collaboration with INDIAN ASSN. OF MUSCULAR DYSTROPHY Camp on 18 th & 19 th July, 2009 Dharamshala DHARAMSHALA CAMP A REPORT VALLEY VIEW DHARAMSHALA Introduction of IAMD INTERNATIONAL CRICKET STADIUM IN DHARAMSHALA 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) and families. IAMD takes up various projects like: JAGRITI AWARENESS WINGS WHEELCHAIR SATHI CARE GIVER PUNARSANJEEVAN Rejenuvation SAHARA FINANCIAL SUPPORT GURUKUL PUNARUTTHAN EDUCATION SAMPARK NIDAAN VOLUNTEER DNA TESTING PHYSIOTHERAPY MANHSTHITI COUNSELING SUPPORT IAMD along with DIET SSA Dharamshala organized, 21 st National Medical Awareness camp on 18 th & 19 th July 2009 in Dharamshala. The camp was focused on providing medical awareness, DNA testing and Care giving for the persons affected Muscular Dystrophy and for Cerebral Palsy affected individuals. A session at Distt. Institute of Educational Training Dharamshala by IAMD members A session at DIET Dharamshala was taken by IAMD members. This was attended by the students, Principal DIET, ID Coordinator, and Staff Members 1
CIRCUIT HOUSE ELECTRICITY REST HOUSE PWD REST HOUSE Team inspected all the venues and held a meeting at circuit house to give the final shape to the two days programme. Members who participated in this meeting were: ID Coordinator Sh. Dharamender ji, Mr. Vijay, Ms. Urmil Thakur, Ms. Usha Gulati, Mr. Vipul Goyal, Mr. Bhartender Bansal, Ms. Rupali, Ms. Sanjana, Ms. Pooja Rana, Mr. Ajay, Mr. Kuldeep Sinhal. Sessions were designed in such a way that After getting registered and having breakfast the participants would be sent to their respective stay venues. Second session would be Dr. Sumit Singh’s meeting and checking each and every participant one to one, then Genetic Counseling by Dr. Reena Dass, then DNA testing by Dr. Vikasini, simultaneously physiotherapy, psychological counseling and games for children would be organized. After having lunch same way sessions will continue. Then formal introduction of each participant. Then light songs and dance. After having dinner participants will go to there respective venues. VENUE The main venue of Camp was B. Ed. College Auditorium. And stay arrangement for the participants were at Circuit House, PWD Rest House, Electricity Guest House, Sainik Rest House, Bachat Bhawan, B. Ed. College Hostel for Girls and Boys, DIET College Hostel for Girls and Boys. 2
REGISTRATION Camp started at 8 AM on 18 th July Saturday with the registration of participants this counter was attended by Kuldeep, Mustaq, Reena and Ekta. In total 118 participant were registered out of which 74 were Muscular Dystrophy affected, 34 were Cerebral Palsy affected and rest 10 were affected with multiple disabilities. ARRANGEMENT It was raining very heavy. But after an hour rain stopped and tents were raised. Stay and food arrangement were made free of cost for 300 participants in total. This includes team of Doctors, resource persons, Parents, Care Givers and Officials. The wheel chairs were made available for all participants. Medical Sessions were coordinated by Mr. Bhartender Bansal, Pooja Rana assisted him. ONE TO ONE MEETING WITH DR. SUMIT SINGH Dr. Sumit Singh, Neuro Physician AIIMS, New Delhi, gave individual counseling to each and every participant. He referred cases for further DNA testing and Genetic counseling GENETIC COUNSELING Genetic counseling was done by Dr. Reena Dass, PGI Chandigarh. Dr. Vinay Pathologist Civil Hospital Palampur assisted her all throughout. DNA TESTING Dr. Vikasini from CCMB Hyderabad took blood samples of participants. She continuously took samples for the both days. Technician from Red Cross Society Mr. Kashmir Singh Rana and Mr. Amit Mehra assisted her.
PHYSIOTHERAPY COUNSELING Physiotherapist assessed all participants individually and gave useful home advice to them and their parents/attendants. This was on for both the days continuously. GAMES Ms. Urmil Thakur and Volunteers from DIET had arranged specially adapted games for the children. They provided many games like Chess, Carom, in which they participated on wheelchairs. Volunteers sang songs, and played antakshri with children. Prizes were distributed to the winners. LIGHT ENTERTAINMENT Apart from above, during different sessions and free time, participants were encouraged to sing, recite poems, share experiences and tell jokes. Dance and Music Introduction session took place in the evening. Each participant gave their introduction and after that there was an energetic dance and music session by the member participants and member volunteers of the Diet college and other guests. Even their parents had great fun by dancing with the people on the wheelchairs. For many it was first hand experience of its kind. After the dance and music session all took Dinner and after then settled down to sleep at different venues fully wheelchair accessible. 4
YOGA & MEDITATION On 19 th July 200 the Day started with the Meditation and Yoga. This was especially designed for Muscular Dystrophy affected participants by Ms. Indira Chambyaal, follower of His Holiness Swami Ram Dev Ji. SESSION BY Dr. SUMIT SINGH After meditation session it was Dr. Sumit Singh who delivered his lecture and power point presentation to throw light upon progress of Stem Cell Therapy research in stem cells. The session had open interaction in which MD affected individuals and their parents put many questions before Dr. Sumit Singh. SESSION BY Physiotherapy consultation Dr. REENA DASS On the day second Dr. Reena Dass spoke on Gene therapy. She was very thorough on her subject and focused on the importance of Genetic counseling. By and large the parents of the affected children were satisfied by she narrated through the Power. Point presentation. 5
FORMAL FUNCTION The Formal session started at 11 AM. on 19 th July 2009 where Ms. Sarveen Chaudhary, Hon’ble Minister, Social Justice & Empowerment was there as a Chief Guest and Mr. R. S. Gupta, Deputy Commissioner Kangra was special Guest of Honour. Other than that the Principal DIET Dharamshala, Ms. Kshama Metre were also graced the function. Mr. Vipul Goyal throw light on IAMD journey and Mile Stone 1992 to 2009 by a nice crisp Power. Point presentation. VOLUNTEERS SUPPORT A team of 32 energetic volunteers (from DIET Dharamshala) were there at each point and venue to assess the Muscular Dystrophy affected individuals. They were fully sensitized about the issues and it was nice watching them working, putting their 100% for the cause. After lunch concluding session was taken by Mr. Vipul, Ms. Urmil Thakur and Mrs. Usha Gulati. Participant volunteers shared their experiences of two days and finally camp was concluded with a word of thanks for, especially the team members of DIET. CONCLUSION Bringing muscular dystrophy affected children and adults for a camp in a place like Himachal is an uphill task. It’s easy said than done. To my surprise 118 affected with muscular dystrophy and cerebral palsy were present for two days. Initially everyone wanted just to meet the doctor but later on no one wanted to leave and everyone wanted to know when we are meeting next!. In this camp 50 wheelchairs were distributed. Note: JAIPUR CAMP: - 33 Blood samples were collected during Jaipur camp, of which the report has been send to the 6 participants.
OUR SPECIAL THANKS TO: - Ms. SARVEEN CHAUDHARY Mr. R. S. GUPTA Mr. D. C. RANA MINISTER, SJ & EMP. DEPUTY COMMISSIONER, KANGRA SDM, DHARAMSHALA Dr. SUMIT SINGH Capt. S. N. ABROL Dr. REENA DASS Mr. BHARTENDER BANSAL Dr. VINAY Mr. MANOJ Dr. VIKASINI Mr. VIJAY Ms. INDIRA CHAMBYAAL www. iamd. org [email protected] com 7