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  Home >> Epilepsy  >> Indian Epilepsy Association Bombay Chapter Activities 2005


Indian Epilepsy Association Bombay Chapter Activities 2005

1. 8th January, 2005 – Musical Fundraiser
To raise funds we hosted the musical ‘Evergreen Melodies’. This was performed by vintage music pioneers ‘Keep Alive’ and was conducted by Manohar Iyer. It was held at the Shanmukhananda Hall, which has a seating capacity of 2800, and every seat was full. The numerous hours of work that went into hosting this event were well worth the effort. We are very grateful to Ashokbhai of Kala Niketan, who was the driving force behind this event, for the effort he put in to make this event a success.

2. Early Intervention & Remedial Work
In the early intervention programme starting from April 2004, 39 candidates have been holistically assessed (medical, psychological and educational) and guidance given. Remedial work has also been taken up with 8 children so far, 4 of them being outstation candidates. Outstation students stayed on for 10 days to 6 weeks for parents to learn to modify their teaching methods to help the child perform better.

The intervention programme was also extended to children of 5th and 6th standards of the J.S.S. Municipal School. 44 children were covered under this programme (26 of 5th and 18 of 6th). Effort was made to teach basic language skills to improve performance, decrease levels of frustration and prevent drop-out. Children showed tremendous improvement at the end of the academic year and two outstanding students were felicitated at the 17th December annual programme.

3. Counselling
Individual, Group and Family counseling is an ongoing activity. Many members and their families have already benefited from the same and some still in the process. Anger management and depression were the two main areas that needed to be addressed.

4. Epilepsy India & Epilepsy Care Newsletters
The Bombay chapter enjoyed editing the National newsletter of the IEA & IES for the last 3 years. ‘April-June 2005’ was the last issue edited by us. It has now been taken over by Dr. V.S. Saxena (editor) and Dr. M. Mehndiratta (co-editor).
The Bombay Chapter, with Dr. Pravina Shah as the Editor and Carol D’Souza as Co-editor, now has its own newsletter ‘Epilepsy Care’ (first issue Oct-Dec 2005). This newsletter has articles in local languages (Hindi & Marathi) and is being distributed to GPs and Neurologists and IEA members situated in Maharashtra, with the support of Nicholas Piramal.

5. Distance Education – Diploma in Epilepsy Care
This Bombay Chapter has helped with the course material (counseling & special education) for the Distance Education programme that is being conducted by the Bangalore University & the IEA. The course will commence in June 2006.

6. Support Group meetings
In 2005 we decided to have fewer guest lectures and have members themselves take charge of conducting the meetings. For example Kavita taught carving of vegetables to be used as food decorations, Christopher shared his experience of going through several interviews to get a job in a leading call center and the work involved there, Carol on arrangements to be made for the Jaipur conference and exhibition cum sales etc. However we did have four guest lectures:
  •  Dr. Dolakia – member National Trust spoke about what the Trust offers.
  • Jasmina Khanna, a young achiever spoke about her life.
  • Mr. Salim Shah of Training & Placements discussed the earning capacity of all individuals, the interview process and what interviewers look for in potential candidates.
  • Mr. Aditya Pant from Pukar spoke about the organization and their objectives regarding research activities with the youth of Mumbai.

 7. 20th February ’05 - Picnic
This yearly event was thoroughly enjoyed by all. We had gone to Ashokhbhai’s farmhouse in Pen. He had also arranged for a music performance in the afternoon.

 8. 5th June, 2005 - Medical cum Awareness Epilepsy Camp at M.G.M.’s Hospital, Vashi.

 9. 26th June, 2005 – support group meeting at Dr. Pravina Shah’s new residence. Undeterred by the rain Samman members and their families attended in large numbers.

 10. July – we commence packaging activity and other pre-vocational activities, for our members who do not have regular jobs and who would benefit from a daily routine, at the E-cell. Behaviour modification is being targeted along with this activity.

 11. Collaboration with Pukar – Pukar an organization of partners for urban knowledge, action and research has initiated a fellowship programme to encourage youth in Mumbai to explore cultural and socio-economic aspects of their lives and develop research skills. Kavita is facilitating the youth fellowship programme as a senior fellow and 10 Samman members will be collaborating the research on ‘Obstacles and challenges in the lives of youth with epilepsy’ as youth fellows. This activity commenced in October 2005.

 12. August – December – Exhibition cum Sales

  •   7th August at St. Joseph’s Convent – the 3rd consecutive year we’ve taken part and have improved our sales and our products with each passing year.
  • 14th August at St. Michael’s Church, Mahim
  • 15th August at the Independence Day celebrations organized by the Karnataka Society, Matunga.
  • 4th September, 9th October, 13th November and December 18th exhibition cum sale at St. Michael’s Church, Mahim
  • 3rd December – The Indus Festival of Charities holds an Exhibition cum Sale for various NGOs. Live music, dance performances, auctions, a food court and a jolly atmosphere are added attractions at this festival. We looked forward to this festival and came back not disappointed as we created a lot of awareness and had a good sale.

13. September 22nd & 23rd – E-Con 2005: Dr. Pravina Shah was invited to deliver the Bajoria Award lecture. At the oration ‘E-Support Groups – Review & Reflections’ she gave a historical account of support groups and her experience nurturing Samman. 16 Samman members attended this E-Con. Manisha, Christopher, Manohar and Ashish spoke on their lives with epilepsy whilst Kavita and Carol spoke on the merits and demerits of disclosing one’s status of epilepsy.

14. October 1 – Diwali Pooja – To mark the Hindu New Year we had prayers for peace and prosperity at the E-Cell. The explanations that were given along with the prayers, made this pooja interesting and meaningful.

15. November 15 – The Epilepsy celebration cum awareness programme started with a Creative Talent Competition that aimed to promote the innate talent that each one has, no matter how severe the epilepsy. The first prize went to Suruchi Mishra for her mehndi art, 2nd place went to Manisha for her shoulder bag, Nitin’s creation: a paper bag won the 3rd prize, Manohar bagged the 4th prize for his beautiful paper roses, and 5th place went to Saranga for her thematic paper lantern. Prize giving was followed by a sumptuous ‘thali’ meal. Dr. Shah then spoke to our members of new beginnings to be made in the New Year.

16. 17th & 18th November we had an epilepsy quiz competition + awareness programme. 311 students of standards 8 & 9 of the J.S.S. Municipal School answered the quiz, which consisted of 18 objective type questions. After the quiz the students were shown an interesting film on epilepsy, which was followed by a Q&A session. Subsequently the rest of the secondary school was also shown the film after which they were given the opportunity to ask questions.

17. 19th November, we hired a 13 seater bus and stopped at strategic places, from Backbay to Bandra (railway stations / tourist spots / promenades) and distributed epilepsy information. Our trip began at 10 a.m. and ended at 8 p.m.

18. 20th November, Sunday, we had an awareness programme at the Crossroads Mall atrium, a famous weekend haunt for many in Mumbai. This was a whole day programme, which began at 10 a.m. and ended at 10 p.m. Visitors were also asked to answer the epilepsy quiz.

19. 23rd to 25th November, Epilepsy Awareness Exhibition – Samman member, Manohar Pimpre took the initiative of contacting the authorities of the Maratha High School and getting permission for an epilepsy stall during their Worli inter-school science competition cum exhibition, thereby creating a large awareness amongst numerous school children, parents and teachers. Mandar and Christopher helped him in this activity. Manohar creatively displayed a write-up on his own life and had a good rapport with the visitors, being an ex-student of the school hosting the exhibition.

20. Saturday, 10th December: A visit to the E-Cell by students doing the course - "Quality of Life Issues in Chronic Illness". As part of this course, Dr Anuradha Sovani, the course coordinator, and Reader in the Department of Applied Psychology, conducted a number of field visits for the participants. A high point of the course was the visit to E-Cell. The participants, 61 in all, visited the centre during a Saturday meeting of Samman and were overwhelmed by the work being done there. Dr Pravina Shah, gave them a thorough background of the cell after which, Dr Urvashi Shah, Carol D’Souza and Sujatha Gopalan also addressed the group. A moving film on the caregiver's messages touched a chord in the group, who then mingled with the members of Samman, learning of their activities first hand.
The participants were very vocal about the inputs they received in the course on Epilepsy, through the visit as well as a very interesting lecture by Dr Urvashi Shah that preceded the visit. Their feedback said that they had not been aware of the finer points of the difficulties faced by people with epilepsy, and were very impressed with the highly motivating and yet humane attitude of all working in this field. They felt one of the important strengths of the group was that people who had beaten the hurdles offered up by the disorder and moved on, were now working for the group, shoulder to shoulder with other professionals.

21. School Awareness - 13th and 24th December Dr. Pravina Shah educated the primary and secondary section parents of the Anjuman-I-Islam’s Allana English School about various aspects of epilepsy. The interest in epilepsy could be gauged from the large turn out at each epilepsy awareness programme as well as the number of questions put forth by the audience. This programme was conducted with the help of the Women’s Movement for Peace and Prosperity of the Times Foundation which is involved in education, health, vocational training and good governance. Through this tie-up we hope to be able to reach many more schools all over Mumbai.

22. Disability rights for people with epilepsy – In the month of July we had received an email from the Disability Rights Initiative (DRI) India Centre for Human Rights and Law regarding the Draft National policy for persons with disabilities asking us to send our comments on the same to the Ministry of Social Justice & Empowerment. We sent in our reply in August requesting that certain categories of people be included under disability status with supporting documents. We followed up with two meetings with the DRI who have their office in Mumbai. They indicated that their lawyer would have to put up a PIL with the IEA Bombay Chapter being one of the respondents.

23. ‘Kshitij’ Saturday, 17th December – This year we wanted to target awareness programmes, nearer to the E-Cell. Therefore just before the Diwali school holidays we had written to over a 100 schools in South Mumbai asking them to take part in an essay competition ‘My Classmate has Epilepsy’. We had this competition in 3 languages i.e. English, Hindi and Marathi. The response from the schools was very encouraging. To felicitate the winners of the essay and quiz competitions as well as our own outstanding members (Santosh, Keyur, Manohar, Christoper) we had a programme ‘Kshitij’. The myths and misconceptions that abound when treating illnesses were reflected in the play ‘Bail Jhapatla’. Chief Guest noted Marathi theatre director Mr. Vijay Kenkre graced the occasion.

24. Website: : Content of the Samman website has been upgraded. It now has the ‘Epilepsy Care’ newsletter on line and better search facilities.

25. Christmas Party – 24th December: Everyone loves a party and so do Samman members. Every 4th Saturday we celebrate birthdays’ of the month and this year 24th being one, it was apt we celebrate the birth of Jesus.

It is one of the beautiful compensations of this life that no one can sincerely try to help another without helping himself. --Charles Dudley Warner