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
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
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
- 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
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,
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
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
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
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
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: www.ieasamman.org : 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.