1973 to 2000
Our journey from 1973 till 2000
Counselling : Psychologists Carol D’Souza and Sheetal Agarwal held individual and group counselling services every Tuesday and Wednesday.
Support Group meetings were held every 2nd and 4th Saturday from 2-4 p.m. Three workshops were conducted during these meetings on Anger Management, Social Skills Training and Self Discipline by Dr. Anuradha Sovani, Dr. Urvashi Shah, Dr. Shubha Thatte, Ruhaina Hydari and Shweta Kadaba.
Yoga classes were conducted by Shilpaben Joshi every Sunday.
Medicine support: carbamazepine was supplied to members at a reduced rate.
Samman members participated in a health exhibition at J.J. Hospital, on 6th and 7th February.
At the 2nd AOEA held in New Delhi on 13th November 2000, Carol D’Souza spoke about her experiences with epilepsy. Hanneke de Boer, Secretary General of the IBE who was present, was very impressed and later asked her to speak at the WHO in Geneva.
Epilepsy Day was celebrated on 19th November 2000, with a program called Anand Jyot. 21 schools (62 students) enthusiastically participated in a Poster Competition titled Helping the Underprivileged for 8th-10th standard students. After the competition we had a mela/fair. Samman members put up game stalls and had a sale of articles made by them. Children from Spastics Society who attended this event did a meaningful skit.
School Awareness: Prior to the poster competition, the Bombay Chapter organized epilepsy awareness programs at few of the schools that were participating in the poster competition.
Yoga sessions were held every Sunday morning conducted by Ms. Shilpaben Joshi
January 1999 During the year, one of our members, Biren Sanghvi made available to us hardboiled sweets. Our members packed these sweets in small packets and sold them to family and friends for a profit.
February 1999 Samman members put up an epilepsy awareness skit for children of JSS Municipal School, Nana Chowk.
Brain Awareness Week was held from the 14th to 21st March 1999. Dr. B.S. Singhal and Dr. Pravina Shah gave public lectures and Samman members participated in a Brain March on the 19th.
20th-25th May 1999 Umang a drama workshop for children with epilepsy was organized at ECell. It was conducted by Shivdas Ghodke Director Natyashala and Bipin Vartak. Simultaneously there were informative lectures for the children parents. Shivdas Ghodke worked on the children body language, voice, culture, imitation etc. Whilst Bipin Vartak acquainted the children with musical sounds, rhythm, group songs etc. Special Educators Medha Lotlikar & Laila Bhatkal, Financial Planner for special kids Mr. Damodar Tilak and Psychologist Pratima Havaldar were invited to talk to the parents.
November 1999 “ Essay Competition My Friend Has Epilepsy“ We were delighted with the response to this competition (255 entries) which gave us an insight into students perceptions of epilepsy and the support they were willing to give people with epilepsy. Essays were sent in either of 4 languages: English, Marathi, Hindi and Gujarati. 3 Prizes were awarded to each category. Many students along with their parents came to ECell to do their research.
21st November Jagruti. Nine Samman members participated in a drama titled Plastic Utsav which highlighted the perils of using plastic. The play was written and directed by Shivdas Ghodke. Guests of Honour Actress Swaroop Sampat and Dr. Rajendra Kale awarded prizes to the winners of the essay competition.
19th December The Picnic to Shraddha Farms was very enjoyable and was made extra special by Dr. Manubhai Kothari who entertained everyone.
The School Awareness program continued through 1998. Two teams were made one that would conduct sessions in English and the other in Hindi / Marathi. A Corporate awareness program was also initiated. Ignatius Misquitta arranged epilepsy education sessions at Hotel Ramada Palm Grove, The Oberoi & The President Hotels.
August 15 & 16, 1998 The Chapter had a Reiki I workshop for our members, conducted by Reiki Masters Varsha & Ravi Hooja.
October 3 & 4, 1998 the Chapter organized the E-Remedial program, to get to know the problems faced by parents and family members of children with epilepsy with the aim of further educating and counseling them.
In the month of November, Dr. Pravina Shah was to attend the Asian & Oceanian Association Epilepsy Congress in Taipei, Taiwan. On her suggestion it was arranged that Carol D’Souza accompany her and speak at the Congress on the Chapter support group activities. This talk was much appreciated. The trip was partly sponsored by the IEA/IEC Trust.
15th November 1998 was the day we inaugurated ECell. The Chapter managed to get leased space in a Municipal School right in the heart of the city and called the Centre ECell as it felt that stood for not only Epilepsy but also a lot of our goals such as Education, Empowerment, Encouragement, Employment etc. At the inauguration we had a song, dance and drama program titled Ankur performed by Samman members and their supporters. We were honoured to have as Chief guest Addl. Municipal Commissioner Shri Ratnakar Gaikwad (who was responsible for granting us space in a Municipal School at Grant Road) and Guests of Honour Dr. Alka Karande, Executive Health Officer and Mr. Bhau Gavande, Education Officer. Achievement awards were given to Dr. Yatrik Buch (a medical officer with BMC Schools who suggested we approach the BMC for office space), Ram Meghare, Manisha Alate, Suneeta Singh, Alpana Barua and Ashwini Mulay. The Bombay Chapter was very grateful to the Kala Niketan family particularly Ashokbhai & Hemaben who renovated and furnished ECell for us. Venue for Samman meetings shifted to the centrally located ECell at JSS Muncipal School Building, 2nd floor, Nana Chowk, Near Grant Road Station, Mumbai 400007.
From its inception ECell has been manned by Sharvari Khot (nee Manisha Alate). She was initially assisted by Minal Bhutta and Aarti Vaish and from 2002-2008 by Alpana Palan. Then for a year (Feb’04-March’05) the Chapter employed Bharti Rathod to supervise ECell activities and from April 05 to date Carol D’Souza has been employed to run the activities at ECell.
17th November 1994 – Bombay chapter had a cultural event performed by patients and medical students. There was also a panel discussion on post traumatic epilepsy. Dr. Pasricha, Inspector General of Police, Maharashtra was the Chief Guest.
Support group meetings were held every Saturday at KEM Hospital from 1994-98 during which time Dr. Chandu Patankar trained members to perform at the Associations cultural events.
A one day seminar on Cognition & Epilepsy was held at KEM Hospital on 5th February, 1995 with Dr. Colin Binnie, Dr. Omkar Makrand, Dr. Zaheer Sayeed and Dr. Zenobia Zaiwalla as the faculty. The same year the Chapter set up an Epilepsy Information Center at KEM Hospital. To fund this, a bag with Samman motto God Helps Those Who Help Themselves was made and sold for Rs.100/- each. Samman epilepsy support group meetings continued every Saturday at OPD No.133 at KEM Hospital.
Before attending the 21st Epilepsy Congress in Sydney in 1995, Dr. Peter Wolf and his wife visited Mumbai and met with Samman members. He encouraged the members with a personal donation for their activities. In 1996 Samman members had the opportunity to interact with Ms. Hanneke de Boer, IBE President, and Mr. Richard Holmes, Secretary General, 22nd International Epilepsy Congress.
17th November, 1996 56 children with epilepsy took part in a painting competition held on KEM Lawns. Artists Pratima Vaidya Dalal and Vasudev Kamat judged the competition. After the competition neurologists and people with epilepsy were felicitated. The event was compered by Dr. Anirudh Chaphekar and Kavita Shanbhag. The following members were felicitated for their achievements in the field of epilepsy. Doctors: Eddie Bharucha, Piloo Bharucha, Anil Desai, Freny Kohiyar, V.P. Mondkar and Noshir Wadia as well as Samman members: Ignatius Misquitta, Archana Palekar, Mahesh Palan, Neeta Sodhi and Kavita Shanbhag. The day ended with Samman theme song Sun, sun, sun composed by Kavita Shanbhag. A detailed article of the event titled Expressions of Exuberance appeared on the Indian Express on 20th November 1996.
Bombay Chapter started its own newsletter Epilepsy News edited by Carol D’Souza and Dr. Pravina Shah. The first issue was brought out in Jan 1997.
On 23rd February 1997 a lecture on Epilepsy, its symptoms, causes, diagnosis and treatments was organized for lay persons at the Jivraj Mehta Lecture Hall, KEM Hospital. Faculty included Dr. Sangeeta Ravat, Dr. B.S. Singhal, Dr. Aun Bhatt, Neeta Sodhi & Dr. Pravina Shah. The meeting concluded with Kavita Shanbhag informing the audience of Samman and its activities.
E-Camp : Samman had grown in size and it was felt that a closer bond would be forged among members if an outstation camp was held. After booking the Leslie Sawhney Centre in Deolali from the 16-20th April, 1997, Dr. Pravina Shah and Dr. Urvashi Shah chalked out the program. There were 18 participants (Samman members) and 10 faculty members: Psychologists Dr. Shubha Thatte, Dr. Urvashi Shah, Dr. Anuradha Sovani and Neeta Sodhi; Dr. Sudha Balachandran Executive Director of the National Society for Equal Opportunity for Handicapped, Mrunal Chowkar, Jyotsna Modi, and Neurologists Dr. Pravina Shah, Dr. Arun Bhatt and Dr. R. Narayan. Yoga teacher Mr. Mirchandani from the Yoga Institute Santacruz also conducted yoga sessions each day. The day began at 6.30 a.m. and ended at 10 p.m. The four day program focused on epilepsy education and empowerment. The workshop was simple, practical and participative. That the camp generated a lot of enthusiasm amongst all who participated can be seen in the spurt of activities that followed.
On 25th May 1997 the chapter organized an interactive workshop on “Your Emotions and Epilepsy” which was compered by Dr. Arun Bhatt at the Jivraj Mehta Lecture Hall, KEM Hospital. Faculty included Dr. Jayanti Mani, Dr. Meena Bhatt, Neeta Sodhi and Shilpa Joshi.
For the first time, in June 1997, the Bombay Chapter requested the IEA /IEC Trust to sponsor patient members Ignatius Misquitta and Kavita Shanbhag participation at the 22nd International Epilepsy Congress particularly the IBE 2 day educational pre-conference workshop on Managing Epilepsy in Dublin. Dr. Pravina Shah was invited to speak at the Congress on Finding Another Way The Role of Traditional Healers and Systems of Alternative Medicine in the management of people with epilepsy.
Once again it was time to celebrate National Epilepsy Day. As this was India 50th year of independence a program titled Freedom was organized on 16th November 1997. The highlight of the program was a well choreographed dance performance to the tune of A.R. Rahman’s Vandhe Mataram put up by doctors and patients at the Patkar Hall, Mumbai. A couple of songs were also rendered by children from the Spastics Society of India. A panel consisting of neurologists: Dr. Pravina Shah, Dr. Sangeeta Ravat, Dr. Khadilkar, Psychologist: Neeta Sodhi, Social Worker Ram Meghare, Occupational therapist Dr. Kalyani, Parent of a person with epilepsy Mr. Daniels and School Principal Fr. Lawrie answered questions from the audience (80 were received!). Noted Gandhian & Freedom Fighter Dr. Usha Mehta and Dr. Ram Barot, Chairman Public Health Committee, BMC were the Guests of Honour. Awards were given to Mrs. Mody and Carol D’Souza in appreciation of their achievements, commitment and dedication to the welfare of persons with epilepsy. The program concluded with a sumptuous buffet lunch.
During the year we also made a 20 minute film titled One in Every Hundred. A donation from Mr. A. Malik made this possible. This film formed part of the audio visual festival held in Dublin.
Samman epilepsy support group meetings continued to be conducted at KEM Hospital OPD No.133 every Saturday. Mrs. Barua a dentist spoke at one of the meetings on dental hygiene and dental problems related to epilepsy. By the end of 1997 Dr. Pravina Shah and Samman members started making efforts to get space to start an information and rehabilitation center.
17th November 1992: Once again national epilepsy day was celebrated with great verve and enthusiasm. At the seminar on Epilepsy & Employment held at the Air India auditorium an eminent panel gave their perspectives on epilepsy and employment (Dr. Abhijit Gangopadhyay, Prof Dept of Personnel Management & Industrial Relations, TISS, and Managers from Godrej & Boyce and Siements Ltd). The medical and social aspects were covered by Dr. Singhal and Ms. Anjana Varkhedkar respectively and the Action Plan by Dr. V.S. Saxena. Shri Dharmadhikari, Retd. Justice was the Chief Guest and Mr. V.W. Joshi, Dy. Municipal Commissioner (Personnel) the Guest of Honour.
Mr. Suresh Shah, Hon. Secretary of Take-Off Orchestra who was in the audience at the epilepsy day program was so impressed by the group that Rs.44,000 collected by Take-Off Orchestra at their Rafi Nite held on 20th December, 1992 was donated to the Chapter for the activities of the support group.
At the 20th International Epilepsy Congress held in Oslo in July 1993, the Bombay Chapter participated in the poster competition organized by IBE. The poster which was made after long discussions with Samman members was presented in Oslo by Dr. Pravina Shah at the seminar on Public Education. Though it did not win a prize the whole exercise was done with the complete enthusiasm and involvement of the group. It was at this time that the group designed a logo for themselves with the words God Helps Those who Help Themselves.
On 22nd August 1993 support group members were taken for a days visit to Spastics Society of India where they learnt about the work done there. The group also did a dance and drama performance at the Center.
On 17th November 1993 to celebrate National Epilepsy Day the Chapter held an awareness programme at V.T. station.
An Epilepsy workshop was organized in March 85 by Dr. E.P. Bharucha and Mrs. Sarla Mody. Mrs. Mody also gave about 6-8 lectures per month in various communities from Churchgate to Bandra which covered an average of 120-150 ladies per month. A stalwart of the Association, President, Mrs. June Cooper passes away.
In December 1986 members of the ILAE Education Commission Dr. Simon Shorvon, Dr. Johannesen, Dr. Olaf Henriksen and Prof. Dieter-Schmidt were invited to participate in a symposium on epilepsy at the NSI conference. IEA took this opportunity and invited them to give lectures at Calcutta, Madras, Bangalore and Bombay. On 1st December a dinner (attended by physicians, psychiatrists, pediatricians and neurologists) was organized at The Oberoi to meet the ILAE members. Prior to the dinner there was a press conference. On 2nd December a symposium on epilepsy was organized mainly for General Practitioners under the joint auspices of Conwest Jain Medical Research Society and the General Practitioners Association (about 150 GPs and Consultants attended). The next day under the joint auspices of IEA Bombay Branch and Association of Physicians of India, a seminar on Drug Therapy and Drug Monitoring was held at KEM Hospital. Dr. Nilima Shirsagar from the Dept. of Pharmacology at KEM Hospital spoke on the subject as well Lunch was provided on both the days.
On 21st December 1986 a painting competition for children having epilepsy was organized. Notice about the competition was sent to various hospitals, consultants and voluntary organizations. Chief Guest (noted actor and MP) Sunil Dutt gave away the prizes to the children. 75 children participated in the competition. In early 1987 Greeting cards were made from the paintings that won prizes.
1988 again was not a very active year but a lot of effort went into getting funds for the 1989 International Congress. Dr. E.P Bharucha worked on the issue regarding Epilepsy & Marriage.
In 1989 Ignatius Misquitta, person with epilepsy, having just returned from Dubai wrote a letter to the editor in the Times of India suggesting that a National Organization to look after the needs of people with epilepsy should be formed. Both Dr. Eddie Barucha and Dr. Pravina Shah replied to Ignatius asking him to join the IEA. This was the beginning of active patient involvement in the Association.
Ignatius was Vice-President of the Chapter from 1997 to 2003 .He has been and will always be a role model for other people with epilepsy.
- Inauguration by the Governor of Maharashtra, Ret. Air Chief Marshal O.P. Mehra, on Sunday 15th February at the Birla Kreeda Kendra at 9.45 a.m. the Epilepsy film was shown and there was a panel discussion for the lay public on Epilepsy & Society moderated by Dr. E.P. Bharucha. On the panel were Mr. V. Sesha Ayyar, Executive Director LIC, Industrialists: Mr. Atul Bhagwati and Mr. Vijay Merchant, Police Commissioner Mr. M.S. Kasbekar, President of IMA Dr. R.K. Menda, Paediatrician Dr. S.M. Merchant, Lawyer Mrs. F. Ponda, Principal of Cathedral School Mr. Eric Simeons and Neurologist Dr. N.H. Wadia. News of the inauguration was broadcast on Radio and TV. B.K. Goyal, Sheriff of Bombay also presided over the function.
- Beautifully designed and informative epilepsy posters were exhibited first at the Birla Kreeda Kendra at Chowpatty and subsequently at Main Railway Stations. The exhibitions were highly appreciated and a note to that effect appeared in a Letter to the Editor column in the press. Subsequently the following social welfare organizations borrowed the posters for exhibition on their premises: (1) H.H. Prince Alikhan Shia Ismalia Central Health Board for India and Prince Alikhan Hospital (2) Malad Medical Association, (3) SNDT University (4) Council for International Programmes Fellowship, India, (5) Indian Council of Social Welfare.
- On the 14th of February at 9.30 p.m. a session titled Doctors Talk It Over was aired over Radio with the participation of Dr. E.P. Bharucha, Dr. S.N. Bhagwati and Dr. B.S. Singhal.
- Through the courtesy of the Film Divisions of India, the documentary film Epilepsy was shown throughout the week at various cinema houses.
- On the 19th, a fundraising Charity Film premier of Alistair Maclean Bear Island was shown to a full house.
- Lectures and a showing of the film on epilepsy were also held during the week at the following places:
- 17th Feb Cathedral School by Dr. E.P. Bharucha
- 17th Feb lecture at SNDT college by Mrs. V. Nadkarni and Dr. P.U. Shah on Psychosocial Implications of Epilepsy.
- 18th Feb awareness program at Rotary Club of Bombay Midtown (Juhu) by Dr. B.S. Singhal
- 19th Feb telecast of show at 10 am with Dr. E.P. Bharucha Dr. S.N. Bhagwati and Dr. B.S. Singhal.
- 19th Feb Symposium for medical practitioners at IMA Hall chaired by Dr. Mrs. P.E. Bharucha and having Dr. Pravina Shah, Dr. R.K. Ambdekar, Dr. B.S. Singhal and Dr. S.N. Bhagwati as faculty.
- 20th Feb Awareness program at Rotary Club of Bombay Central by Dr. E.P. Bharucha.
- 20th Feb Awareness program at Bombay North-West Rotary Club, Malad by Dr. Anupam Desai.
Epilepsy awareness programs continued throughout 1981-82; Dr. E.P. Bharucha conducted a program on the 12th of March at Rotary Club of South Bombay, CCI at 6.30 p.m. On the 3rd of October during the International Meeting of Neurosciences held in Mumbai, Dr. Bharucha organized a symposium on Industry and Epilepsy at the Taj Intercontinental. During the year 19 lectures were arranged at various schools where the film on epilepsy was shown. The attendance in the schools varied from 78 to 642 and the programs were well appreciated. Through the efforts of Dr. Mrs. P.E. Bharucha and Dr. E.P. Bharucha 1000 greeting cards were also printed and sold. A copy of the film on epilepsy was presented to the Kenya Association for the welfare of persons with epilepsy.
1982-83 was comparatively a quiet year with the main emphasis being on educational programs at various schools which were very effectively arranged by Mrs. Sarla Mody. The posters also continued to be in demand for exhibition at various social organizations. A portrait of Dr. Eddie Bharucha was printed in the International Epilepsy Newsletter (Vol69 Oct 82) and an article on the Bombay Chapter appeared in the Hindi magazine Dharmayug. This article generated many enquiries.
Dr. Pravina Shah was elected Secretary of the Bombay Chapter in 1983 the year Prof. Masland, President of the World Federation of Neurology & Secretary Epilepsy International, was scheduled to visit Mumbai. Dr. Shah soon began preparing for his arrival (28th Nov – 2nd Dec 1983). Visits to Nair, KEM and J.J. Hospitals were organized and a seminar on Epilepsy was organized at IMA Hall, Haji Ali where Dr. Masland spoke on Treatment of Epilepsy. Dr. E.P. Bharucha, Dr. B.S. Singhal and Dr. Anil Desai were the other faculty members. Dr. Masland also gave the P.C. Bharucha memorial oration at the Jivraj Mehta Hall at KEM Hospital on the 28th of November and was interviewed on TV by Suman Seth. During the year greeting cards were printed by the Association.
The first Bombay Chapter epilepsy education program for teachers was held on 5th October 1974 for 60 teachers of Colaba Municipal Schools. It was given in Marathi by Dr. V.P. Mondkar.
One of the big events in 1974 was the visit of IBE delegates Mr. George Burden, Dr. Harry Meinardi, Dr. Peter Jeavons and Dr. Morris Parsonage on the 11th and 12th of November. Dr. Eddie Bharucha made their visit a grand success. During their visit they participated in Seminars: Epilepsy in Children (KEM Hospital, Parel), Epilepsy in Adults (J.J. Hospital, Byculla), Press conference West End Hotel (reports appeared in the Times of India and Indian Express), Televised interview Participants: Dr. Bharucha, Mr. Burden & Dr. Parsonag, Epilepsy Education Program Lions Club (for their members), Epilepsy Education Program – Hindustan Lever Auditorium (for 150 lay people)
In 1974 Dr. S.N. Bhagwati got sponsorship from M/s. Bhagwati Charity Trust for the making of a film on epilepsy.
Enormous amount of work went into the making of this film that kept the team busy through 1975-76. Eminent Film Director Mr. Shyam Benegal agreed to make the film without his professional charge. During this time with the help of a professional artist, Dr. Pravina Shah got 18 large posters made in English and Hindi which were to be used at epilepsy education programs.
In 1975 Dr. Eddie Bharucha received the Ambassador for Epilepsy Award.This award is given every two years, jointly by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), to individuals to recognize their outstanding personal contributions to activities that advance the cause of epilepsy. Dr. Bharucha who was Secretary of the IEA from the times of its formation in 1971 right up to 1991 worked tirelessly to nurture the IEA and the Bombay Chapter.
A preview of the film which was titled Epilepsy was held at Liberty Mini Theatre on 30th April, 1976 at 9 pm. Suggestions for improvement were given and then implemented. The film was donated to the Film Division of India for dubbing in 14 languages and broadcast all over India and the rights of the film then rested with the Film Division. Clearance was also obtained from the Film Censor Board for unrestricted public screening. The film was shown at a Press Conference held at the Tea Centre on 30th November, 1976.
On 2nd December 1976 a charity film premier The Return of the Pink Panther was organized at the Regal Theater. This was the Chapters first fundraising event. The film on Epilepsy was also exhibited at the event.
During the years 1977 to 1979 activities focused on helping with the dubbing and screening of the film at various places as well as on getting the Films Division to broadcast it nationally. In March 1979 the Bombay Chapter bought 4 of these films (16mm prints) one each in Marathi, Hindi, Gujarati & English @ Rs.276/- each so that the same could be used at Educational programs in Mumbai.
To successfully educate children, in 1979-80, the Dos & Donts Epilepsy leaflets were printed and used at school awareness programs. Lapel buttons with the IEA emblem and an epilepsy folder titled The Truth About Epilepsy were also made for all IEA members by Dr. & Mrs. Eddie Bharucha. In 1980 the legendary cricketer and tireless social worker Mr. Vijay Merchant became a member of the Advisory Board of the Bombay Chapter. Sometime in 1980-81 Mrs. Sarla Mody was hired as a part time social worker. By September 1980 discussions started regarding an epilepsy week to be held the following year.