Our journey from 2001 to 2010
In addition to support group meetings, counseling, special education and yoga we started computer classes once a week on Thursdays from 11 a.m. to 1 p.m.
We began the year with a medical camp at Pen on 3rd January. On 28th January the first computer class was held for Samman members.
At Econ 2010 on 5th February Dr. Pravina Shah gave the Presidential Oration on Epicare The Need of the Hour. 14 Samman members attended this conference in Indore. Santosh Tholar and Bevinda Fernandes spoke at the KS Mani Session. Our members also made the spiritual journey to Ujjain and Omkareshwar.
20th March 2010 We took part in an exhibition cum sale organized by the Breach Candy Club on their premises.
E-Rehabilitation: From April-December 2010 we had art, craft and general knowledge classes twice a week conducted by Shenaz Haveliwala. We also had counseling sessions with the participants and their families. Additionally Kavita Shanbhag who was in the process of doing an Art Based Therapy course started conducting sessions at ECell.
Rural Epilepsy Camps held in Pen : Ashokbhai Parekh, General Physician Dr. Wagle and Physiotherapist Dr. Dhruv continued to support Dr. Pravina Shah and the team of volunteers from the Bombay Chapter in this endeavor. The following camps were held in 2010:
| Camp No. | 17 | 18 | 19 | 20 | 21 | 22 | 23 |
| Dates of camps | 3.1 | 7.3 | 1.5 | 27.6 | 22.8 | 24.11 | 19.12 |
| Total Epilesy New + follow-up | 72 | 78 | 83 | 82 | 90 | 92 | 84 |
| Total Non-Epilepsy | 8 | 2 | 4 | 1 | 8 | 1 | 2 |
| Total Epilesy + Non-Epilepsy | 80 | 80 | 87 | 83 | 98 | 93 | 86 |
| New Cases | 12 | 10 | 4 | 10 | 11 | 13 | 7 |
| Follow-up ep cases | 60 | 68 | 79 | 72 | 80 | 79 | 77 |
E-STAR (Epilepsy Student & Teacher Awareness Reachout)
Letters were sent to approximately 250 schools in Mumbai with a request for permission to conduct an epilepsy awareness program. We conducted programs at the following schools:
- Sir J.J. Girls High School, Fort, 2nd November 2010
- Loretto Convent, Chembur, 3rd November 2010
- Pawar Public School, Bhandup West, 23rd November 2010
- Modern School, Sikka Nagar, Girgaon, 30th November 2010
- Devji Nanji Anchorwala High School, Chinchpokali, 9th December 2010
- M. Shetty International School, Powai, 10th December 2010
Support Group Meetings (2nd & 4th Saturdays)
Each of our support group meetings focused on a different topic and each member voluntarily gave his/her views on the topic.
Date Topic
9th Jan Debate on Conferences are they worth attending
23rd Jan Computer teacher Anil Uttarkar spoke of the classes he was going to conduct at ECell
13th Feb Training in conversational English
13th March AGM
27th March Seizures what is my type? (Kavita Shanbhag brought purple cup cakes in celebration of Purple Day)
10th April The importance of forgiveness and humility
24th April Celebration of birthdays members spoke about their love for Dr. Pravina Shah and the impact she has had on their lives.
12th May Why the Stigma in Epilepsy?
22nd May A look at the year ahead and the activities we would like.
14th Aug What does independence means to us?
28th Aug What can you do if seizures do not come under control?
25th Sept Sharing current news and our views
9th Oct Members help mail letters to schools
23rd Oct Discussion of program for national epilepsy day celebration
27th Nov Public speaking Members was given 1-5 minutes to speak on a topic of his/her choice
11th Dec10 Salad making competition
Carol D’Souza conducted the above meetings. The meetings start with Paramahansa Yoganandas superconscious exercises, after which we have sharing of news. Then the topic for discussion is taken up and the meeting ends with 1 minute games and snacks.
At the 8th Asian Oceanian Epilepsy Congress held in Melbourne in October 2010, Kavita Shanbhag was awarded the Outstanding Person With Epilepsy Award.
Epilepsy Day Celebrations “17th November 2010, Krishna Palace “ This year the theme for epilepsy awareness was Epilepsy, Women & Children. The educative part of these celebrations had a monoact play put up by Kavita Shanbhag on the life of a woman with epilepsy. Dr. Pravina Shah also had a chat with women with epilepsy, whom she called from the audience, and asked them various questions regarding coping with epilepsy after onset, their experiences in relation to getting employment, finding suitors, marriage, children etc. Carol D’Souza presented on PowerPoint the activities of the Association. We also felicitated Ashokbhai & Hemaben, Dr. Dhruv, Dr. Wagle and Ruchi Saxena of UCB India for their immense support to us.
Exhibition cum sale December 4, 2010 Once again we enjoyed participating at the Indus festival of Charities held at YMCA Colaba.
Support group meetings, counseling and special education continued to be regular activities.
On 24th January 2009 for a change Support group members met in Dr. Pravina Shahs new home. Dr. Shah surprised members by having a live counter of delicious Mumbai paani-puri, bhel and dahi batata puri.
Exhibition cum Sale 14th February 2009. We spent the morning of Valentines Day interacting with other NGOs and customers at the exhibition cum sale organized by the Indus Festival of Charities. Products made by Tanvi, Sydney, Sarah, Suruchi and others were sold. We also took this opportunity to visit the Kala Ghoda festival.
Econ 2009 Tirupati 7 & 8 February 17 Samman members attended for this Econ. They performed a skit and two members (M Palan & V Rane) shared their experiences with epilepsy. The Group was also blessed with a Darshan of Lord Balaji at the Tirupati Temple.
Hospital Awareness, Holy Family Hospital, Bandra 15th February: At this program organized by HFH we put up a presentation about our activities.The presentation went well and got us a few new members. On 21st February, 2009 at Bombay Hospital, Marine Lines, we had a Conquering Epilepsy program.
During the month of April we had 4 events: celebration of Dr. Shahs birthday on 6th April; a surprise birthday party for our long time supporter Ashokbhai at Krishna Place on 11 April; a medical camp at Pen on 19th April and a support group meeting on 25th April.
On 9th May our support group meeting focused on achieving change in our lives and on 23rd May we conducted a carom tournament for our members. On May 31st we had another medical camp in Pen.
We had support group meetings on 13th and 27th June which focused on Sri Sri Ravi Shankers principles for spiritual living. End June Carol D’Souza left for Budapest to collect the Ambassador for Epilepsy Award at the 28th International Epilepsy Congress held in Budapest.
On the 19th of July a Conquer Epilepsy program was held at the Gorakhpur chapter of the IEA with support from UCB and IEA Bombay Chapter. At the support group meetings on 11th and 25th July we continued with Sri Sri Ravi Shankers principles for spiritual living and on 26th July we had a medical camp at Pen.
8th August saw the support group meeting focused on current happenings and on learning from each other through sharing of meaningful life events.22nd August support group meeting was dedicated to the forthcoming Econ 2010 at Indore and on 23rd August we took part in the annual exhibition cum sale for NGOs at St. Josephs Convent, Bandra.
12th & 26th September we had support group meetings (SGM). 12th being Navratri, Kavita conducted a dandiya dance competition and various prizes were given for best couple, best dancer, most creative dancer etc. On the 26th of September we had a Conquering Epilepsy program at D.Y. Patil Hospital, Navi Mumbai. And on 20th September we had a medical camp in Pen.
On 10th October Samman members enjoyed antakshri and on 24th October Mr. Anil Uttarkar a former NIIT teacher who runs computer classes explained about the ease of using computers.
9th November 22 reporters attended the press conference organized by us at the Press Club. The result was 10 press articles in leading dailies in various languages. UCB India Limited in association with our Chapter gave a full page ad on epilepsy on 17th November and handed out 40,000 epilepsy calendar cards to the lay public at strategic locations. The material for the ad was sourced from epilepsy professionals in India.
14th November: representatives from the NGO Manashakti spoke to Samman members on living a life free of stress and tension.
15th November Picnic to Silent Hills Resort members enjoyed the ambience and the water sports. Psychiatrist Dr. Manoj Bhatavdekar had a short session on reducing tension and appropriate communication.
29th November Epilepsy Education Program for GPs The Chapter in association with the General Practitioners of Greater Bombay organized a one day epilepsy education program for GPs (sponsored by UCB). 90 GPs attended this program which was held at Krishna Palace, Grant Road. Website: Our website was upgraded and renamed ieaecell.org. It was inaugurated by Dr. S.N. Bhagwati (who also sponsored the site) and Dr. B.S. Singhal. The site was designed by our member Santosh Tholar and his partner Hemanshu Gandhi.
5th December we took part in an exhibition cum sale for NGOs conduced by the Indus Festival of Charities at the YMCA Colaba.
Medical Camp Details 2009
| Camp No. | 10 | 11 | 12 | 13 | 14 | 15 | 16 |
| Dates of camps | 18.1.09 | 8.3 | 19.4 | 31.5 | 26.7 | 20.9 | 8.11 |
| Total Epilesy New + follow-up | 39 | 41 | 37 | 47 | 46 | 53 | 72 |
| Total Non-Epilepsy | 3 | 3 | 0 | 1 | 6 | 8 | 6 |
| Total Epilesy + Non-Epilepsy | 42 | 44 | 37 | 48 | 52 | 61 | 78 |
| New Cases | 10 | 9 | 6 | 6 | 4 | 9 | 21 |
| Follow-up ep cases | 29 | 32 | 31 | 48 | 43 | 44 | 51 |
Counseling, special education, yoga and support group meetings were conducted throughout the year.
Rural Epilepsy Clinics Every 6 weeks a rural clinic was conducted at Pen and medicines distributed free or at a nominal rate. 7 Clinics were held in 2008.
| Camp No. | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 |
| Dates of camps | 18.11.07 | 16.12 | 24.2.08 | 30.3 | 25.5 | 20.7 | 31.8 | 12.10 | 30.11 |
| Total Epilesy New + follow-up | 25 | 35 | 33 | 23 | 22 | 27 | 37 | 37 | 34 |
| Total Non-Epilepsy | 15 | 11 | 4 | 2 | 1 | 0 | 0 | 0 | 4 |
| Total Epilesy + Non-Epilepsy | 40 | 46 | 37 | 25 | 23 | 27 | 37 | 37 | 38 |
| New Cases | 25 | 21 | 12 | 1 | 0 | 4 | 9 | 10 | 4 |
| Follow-up ep cases | 0 | 14 | 21 | 22 | 22 | 23 | 28 | 27 | 30 |
A comprehensive team consisting of a neurologist, general physician, psychologist, special educator and at times a physiotherapist and homeopath attend to patients at each camp.
Musical Fundraiser 19th April 2008, Ravindra Natya Mandir, Prabhadevi This fundraiser Ek Shaam Amar Saaz Aur Awaaz Ki had the musicians of Bollywood sing and play old and modern songs with instruments as varied as the madal, castanets, tabla, drums, grand piano etc. Once again Ashokbhai and Hemaben were instrumental in contributing towards its success.
At the 7th Asian Oceanian Epilepsy Congress held in Xiamen, China in May 2008,Carol D’Souza was awarded the Outstanding Person with Epilepsy Award.
Diwali Party: On 25th October we had a Diwali party and painting competition (painting of diyas and painting / making of greeting cards) for our members. After the competition all members enjoyed lunch at Shettys Restaurant where Dr. Pravina Shah handed over the prizes.
Awareness Program At Hospitals The Chapter co-ordinated with doctors from the following hospitals and participated in the following awareness programs held at
P.D. Hinduja National Hospital, Mahim, 23rd August, 2008
Wockhardt Hospital, Mulund,17th November, 2008
K.J. Somaiya Hospital, Sion, 22nd November, 2008
While the program at Wockhardt was initiated by them the other two were initiated by UCB Pharma and the IEA and these programs were called Conquering Epilepsy.
Celebrating Epilepsy Month: In addition to the above two awareness programs held in the month of November, we also had celebrations at the rural camp in Pen held on 30th November. Instead of the usual breakfast a lavish lunch was offered to the villagers courtesy Ashokbhai and Hemaben Parekh after which children from the nearby orphanage (Child Haven International) and Special School (Sumangal School for Mentally Retarded, Hearing Impaired and Multiple Handicapped children) danced and recited poems. Their performances gave us an idea of the skill training they receive. It was a joyous event celebrated by everyone: the performers and the audience which comprised of people with epilepsy, their caregivers and supporters.
Blog ecellin.wordpress.com: This blog created and managed by Carol D’Souza, has up-to-date information on forthcoming programs of the Bombay Chapter and details of events and support group meetings as and when conducted. It also gives information on epilepsy OPDs, guides parents and is interactive, informative and helpful.
On 11th December 2008 we had an epilepsy awareness program conducted by Carol D’Souza for 9th standard students of St. Gregorius School, Chembur.
Christmas party 13th December: Sydney Santa once again made everyone happy. We had an informative session on Jesus Christ and his mission, played games and had hot snacks, cake and tea.
Counselling, special education, yoga, support group meetings and medicine subsidy continued as in the year 2006. Other major events were as follows:
Fundraiser Kal, Aaj Aur Kal 14th April 2007 Live Hindi music from yesteryears to date This was our second musical fund raiser which was held at Yashwant Natya Mandir, Matunga. We thank Ashokbhai Parekh and the Kala Niketan family for their enormous support which contributed to the success of the program.
27th International Epilepsy Congress, Singapore Dr. Urvashi Shah presented the IEA sponsored research Intractable Epilepsy or Disabling Epilepsy : What should be the Criteria For Disability and Carol D’Souza presented a paper on Quality of Life Should Doctors Assess It and Use .
Exhibition cum Sale 5th August Once again we took part in the mela held at St. Josephs Convent for NGOs. We raised awareness as well as sold a lot of products made by our members.
ECon 2007 This conference was held in Mumbai. Enormous amount of effort was put in by Organizing Secretary Dr. Sangeeta Ravat and Jt. Organizing Secretary Dr. Urvashi Shah which made this a grand success. Excess money raised from this event went towards sponsoring poor patients epilepsy surgeries and medicine subsidy for our members.
National Epilepsy Day 17th November we participated in the event organized by Dr. Nirmal Surya which launched his film Asha The Hope and raised awareness about epilepsy.
Rural Epilepsy Camp On 17th November (after Dr. Suryas program) a team of people left for Pen to conduct a rural camp there the next day (18th Nov). 31 patients attended this first camp out of which 26 had epilepsy. The second camp was conducted in the same place on 16th December which had 21 new patients and 17 follow-up patients. A total of 58 people were diagnosed as having epilepsy and medicines distributed to them.
Epilepsy & Disability The Neurosciences Group, organized a meeting in Chennai on 16th July 2007. Members of the Disability Committee from Mumbai attended this meeting.
Publications Life stories of people with epilepsy written by Carol D’Souza were printed in a series of 3 booklets each having 2 life stories in English and Hindi. This was printed by MacMillan India Limited and sponsored by USV Limited.
During the year we had counseling, special education, yoga and support group meetings.
21st January Guest Lecture Dr. Fatema Bapai, Consulting orthondontist of Conwest Jain Hospital spoke to Samman members about Good Oral Hygiene.
Epilepsy Education
3rd January 2006 34 students from the National Institute for the Mentally Handicapped visit ECell. They were pursuing their Diploma in Early Childhood Special Education. Special Educator Sujatha Goplan spoke to them.
School Awareness Programs The Times Foundation Womens Movement for Peace & Prosperity cell asked us to join them in their goal of empowering women and children through health. We participated in two awareness programs organized by them: one on 24th January at VBM Model School and the other on 6th March at Commo Jafar Sulaiman Girls High School.
Separately the Chapter organized epilepsy awareness programs at the following schools:
- Jalabai Dorabji Bharda High School, Nana Chowk on 8th February
- Wilson High School, Gamdevi on 17th February
- BJPC High School, Charini Road on 1st August
- Rokhadia Municipal High School on 29th September
- Mary Immaculate Primary School Teachers on 22nd September
These programs were conducted by Sujatha Gopalan, Carol D’Souza and Manisha Alate, with help from Nikhil Agarwal and Raju Jadhav. Depending on time and facilities available, the children were given a quiz and then shown a film or slide presentation. This was followed by a Q&A session.
Picnic February 12: For the first time, the Pune Self Help Group Samvedna and Samman had a joint picnic at Pen. Music, dancing, singing, games and good food marked the event. 42 people came from Pune and 55 from Mumbai.
Excursion : 25th March members were taken to Priyadarshni Park at Nepean Sea Road and then to Sarah Sharmas home.
Slogan Writing: On 13th May Kavita gave tips on how to write slogans which inspired many members to enter the slogan writing competition organized by the IEA. Kavita Shanbhag won the 3rd prize with her entry Inspite of fits, fit for life.
Pukar: Kavita Shanbhag and the Samman team presented the research findings of the group at a function organized by Pukar at Shanmukhananda Hall on 24th June.
Econ 2006 8 Samman members attend this conference in Bangalore. Dr. Yatrik Buch and Santosh Tholar spoke at the KS Mani Memorial Session.
Movie Phir Hera Pheri June 18: 50 Samman members thoroughly enjoyed this comedy film which was sponsored by Dr. Urvashi Shah.
Life Skill Training Program this program which started on the 18th of September 2006 involved sessions on yoga, counseling, general education, English and computer education, craft, personality development, cooking and outdoor learning trips. Sujatha Gopalan was the main person involved in conducting this program.
Epilepsy Care: We had 4 issues in 2006. These were sponsored and distributed by Nicholas Piramal to doctors all over Maharashtra by their field staff as well as sent to School Principals and our members.
Medicine Subsidy: In addition to Tegrital, we started giving Tegrital CR, Valparin CR, Frisium and Topamac at a discount to our members.
E-Disability : Dr. PU Shah, Dr. Urvashi Shah, Carol D’Souza and Kavita Shanbhag met with advocates to understand how best to get disabling epilepsy under the Governments Disability category. They also attended Disability workshops conducted by the Spastics Society of India, National Association for the Blind, Symbiosis Law Institute and a 2 day workshop (9th & 10th Dec) in Chennai organized by the Neurosciences group.
On 13th August Dr. B.S. Singhal arranged for members to view the Film Two Sisters at Sasmira Auditorium, Worli.
National Epilepsy Day Celebrations: As Samman completed 15 years we had a Coming of Age celebration at Hotel Krishna Palace, Grant Road on 19th November.
Job Fair, 3rd December: Spastics Society hosted a job fair. 6 of our members were interviewed by the large number of Corporates that were present and one was successful.
23rd December Christmas party A special visit from Sydney Santa delighted all. Kavita & Devrai Shanbhag sponsored the special treat that followed.
Support Group Meetings were held every 2nd and 4th Saturday. At some of the meetings the following activities / lectures were conducted:
Vegetable carving – Kavita Shanbhag
My experience at interviews – Christopher Fernandes
National Trust & benefits available to people with disabilities – Dr. Dholakia
Overcoming challenges faced due to physical disability – Jasmina Khanna
The Earning Capacity of Each Individual – Salim Shah
Pukar Activities – Aditya Pant
Conversations with God – Dr. Urvashi Shah
On 26th June 2005 our support group meeting was held at Dr. Pravina Shahs residence.
Early Intervention & Remedial Work Special Educator Sujatha Gopalan
39 children were holistically assessed and guided. Remedial work was taken up with 8 children, 4 of them were outstation candidates. Outstation students stayed for 10 days to 6 weeks during which time parents were taught to modify their teaching methods to help the child perform better.
The intervention program also extended to children of 5th and 6th standards of the JSS Municipal School. 44 children were covered under this program. Basic language skills to improve performance were taught.
Counselling Carol D’Souza conducted Individual, Group & Family counseling and therapy every Tuesday. Group sessions in 2005 dealt largely with anger management and depression.
Making & Sale of Masala Powders: This initiative aimed at increasing skills and independence of members was started by Sujatha Gopalan and Vinita Gujjar.
Fundraiser Everygreen Melodies 8th January 2005 Held at the Shanmukhananda Auditorium to a full house with over 2800 seating capacity, the group Keep Alive entertained with an array of musical instruments and Hindi songs. This was a very, very successful and enjoyable fundraiser. The idea and support to have a musical fundraiser came largely from Ashokbhai Parekh.
Epilepsy India & Epilepsy Care Newsletters
The Bombay Chapter enjoyed editing the national newsletter for the last 3 years. The April-June 2005 issue was the last issue edited by Dr. Pravina Shah and Carol D’Souza.
Beginning Oct-Dec 2005 the Bombay Chapter started editing its own newsletter Epilepsy Care with Dr. Pravina Shah as editor and Carol D’Souza as Co-editor. This newsletter was distributed to GPs, neurologists, IEA members in Maharashtra and to school principals of 275 schools.
Diploma in Epilepsy Care
The Bombay Chapter (Carol D’Souza, Sujatha Gopalan & Sheetal Agarwal) helped with the course material (Counselling & Special Education modules) for the Distance Education diploma which is offered by the Bangalore University in collaboration with CBR Network South Asia and IEA. This course commenced on 6th June 2006.
Picnic at Pen 28th February 2005 this day picnic held at Ashokbhais farm at Pen had music (live performance), games and good food.
July 2005 A toy manufacturer gave us the job of counting bullets and filling them in boxes. Members were paid on a per piece basis.
Collaboration with Pukar Kavita Shanbhag joined Pukar, an organization of partners for urban knowledge, action and research, as a Senior Fellow. She along with 10 Samman members did a research on Obstacles and Challenges in the lives of Youth with Epilepsy. This activity commenced in October 2005.
Exhibition cum Sales At the following events our members sold products (crochet items, paper bags, food items) they made. We took part in 7 of them as follows:
7th August at St. Josephs Convent the 3rd consecutive year we participated in the mela organized for various NGOs by the Ex-students of the school.
15th August at Karnatak Society Independence day celebrations.
4th September, 9th October, 13th November and 18th December at St. Michael’s Church, Mahim.
3rd December the Indus Festival of Charities held at YMCA, Colaba
E-Con 2005 Dr. Pravina Shah was invited to deliver the Bajoria Oration on E-Support Groups review & reflections. 16 Samman members traveled to Jaipur for this conference. 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. After the conference they also traveled to Ajmer to visit the Dargah of the Sufi Saint Moinuddin Chisti.
October 1, 2005 Diwali pooja To mark the Hindu new year we had prayers for peace and prosperity at ECell.
Epilepsy Week Celebrations 15th to 25th November 2005
15th November Creative Talent Competition for people having epilepsy.
17th & 18th November epilepsy quiz competition + awareness program. 311 students of standards 8 & 9 participated in this. After the quiz, a film on epilepsy was shown and a Q&A session followed.
19th November Raising Epilepsy Awareness : 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 am and ended at 8 pm. An eye-catching banner was displayed on the bus.
20th November Awareness program at Crossroads Mall.
23rd – 25th November One of our members Manohar took the initiative and got us permission to have a stall at the Inter-School Science competition cum exhibition. Awareness was created amongst numerous school children, parents and teachers. Manohar an ex-student of the hosting school creatively displayed a write-up on his own life with epilepsy.
Epilepsy Education
10th December 61 Masters students from the department of Applied Psychology visited ECell. Dr. Pravina Shah, Dr. Urvashi Shah, Sujatha Gopalan and Carol D’Souza addressed the group after which the moving film Caring for the Caregivers was shown.
School Awareness 13th and 24th December Dr. Pravina Shah educated the primary and secondary section parents of the Anjuman-I-Islam school. The program was conducted with the help of the Womens Movement for Peace and Prosperity of the Times Foundation.
Disability in Epilepsy Disability Rights Initiative (DRI) India Centre for Human Rights and Law asked us to send our recommendation on disability in epilepsy to the Ministry of Social Justice & Empowerment. We had two meetings with the DRI and their lawyer and sent our recommendations.
17th December Kshitij To felicitate the winners of the Essay competition on My Classmate has Epilepsy we had a cultural program. Appreciation awards were also given to our own members Santosh, Keyur, Manohar and Christopher. The myths and misconceptions that abound when treating illnesses were reflected in the play Bail Jhapatla; noted Marathi theatre director Mr. Vijay Kenkre was the Chief Guest.
Content of the website: www.ieasamman.org was upgraded.
24th December Samman members enjoy a Christmas Party with games, food and gifts.
Samman support group meetings were conducted every 2nd and 4th Saturday during which the following workshops / lectures were conducted:
- Origami – Yashodha Wakankar
- Preparing Oneself for a job interview – Ronald D’Souza
- Common Courtesies to be extended to visitors – Kinnari Bodani
- Epilepsy what type do you have – Kinnari Bodani
- The meaning of love – Dr. Urvashi Shah
- Count your blessings – Dr. Urvashi Shah
- Forgiveness – Kinnari Bodani
- Discipline yourself – Kinnari Bodani
- Recommitting ourselves to our goals – Dr. Pravina Shah
- Conquering blindness – Ketan Kothari
- Learning to surrender – Dr. Urvashi Shah
- Self Development – Nita Patil Sodhi
- Discipline – Kavita Shanbhag
- Overcoming cancer – Saket
- My experience setting up a support group – Dr. Karandikar
- Performance by sarod player Mr. Vivek Joshi
- Temporal Lobe epilepsy and surgery – Dr. Pravina Shah
- Epilepsy and its management – Dr. Pravina Shah
- Relationships & Expectations from a marriage partner – Kinnari & Carol
- Skill training using role play common social interactions
- Meaning of the Gayatri Mantra Mr. Thacker
Excursion Trips undertaken by Samman members on 5th Saturdays conducted by Kinnari Bodani:
- Visit to Mani Bhavan
- Visit to Mahalaxmi Temple
- Visit to Aban Jokis home to learn microwave cooking.
Yoga classes were conducted by Kinnari Bodani twice a month.
During the year anti-epileptic drugs were given to members at a subsidized rate.
Conferences Attended
- Kavita Shanbhag, Carol D’Souza and Ignatius Misquitta attended the 5th August 2004 in Bangkok. Ignatius received the Outstanding Person with Epilepsy award; Kavita performed a monoact on the life of a woman with epilepsy and Carol was invited to speak on Discrimination related to epilepsy in India.
- Econ 2004, 28-29 October 2004 – 17 Samman members attended this conference which was held in Nagpur. Keyur and Ashwini shared their experiences on living with epilepsy at the KS Mani session and our members did a skit on Ability & Epilepsy. There was also a session on Early Intervention for children with epilepsy organized by Dr. Pravina Shah and Dr. Urvashi Shah. After the conference members were taken for a visit to Anandvan where they were blessed by Baba Amte.
Conferences / Workshops organized
6-10 February 2004 An EEG training workshop at KEM Hospital was organized by the IEA and sponsored jointly by the IEA, 18the IEC Trust, the 14th world congress of Neurology (India) trust and the Seth GSMC and KEMH Diamond Jubilee Trust. It was attended by 32 Technicians, 60 Neurologists, 8 Pediatricians, 23 Psychiatrists including post graduate trainees. At the informal get-together on February 6, 1994, the self-help group Samman sang a song. International faculty comprised (Dr. CD Binnie (Convenor), Consultant Clinical Neurophysiologist and Director of Clinical Neurosciences at Maudsley Hospital, London; Dr. Z Zaiwala Consultant Paediatric clinical Neurophysiologist, The Park Hospital for Children, Oxford and Ms. Beate Gross, Chief EEG Technologist, Maudley Hospital, London.
Early Intervention Program
25th April 2004 Phase I consisted of getting to know the individual needs and expectation of participants. 25 families registered for this program which had as faculty Neurologists Dr. Anaita Hegde, Dr. Sangeeta Ravat, Psychiatrist Dr. Harish Shetty and Ms. Arundhati Chavan Head of Parent Teachers Forum in Mumbai. Dr. Urvashi Shah compered the sessions. The needs of participants largely revolved around educational and behavioural assessment.
Phase II involved medical, psychological and educational assessment. This was conducted during the month of June 2004. Dr. Pravina Shah, Dr. Urvashi Shah, Siddika Panjwani, Sujatha Gopalan were the main people involved in this activity.
Phase III began in July 2004 and continued for the rest of the year. It comprised of functional literacy, value education and pre-vocational activities. Students were also taught socially appropriate behavior. For non-school going children this was conducted from Monday to Friday from 10.30 a.m. to 1.30 p.m. School going children were taken on the week ends. From 2004 to 2007 Sujatha Gopalan was the main co-ordinator and special educator for this program.
Epilepsy Beyond Seizures September 2004 This program which focused not just on epilepsy but also on educational and behavioural management had as faculty Prof. Gus Baker (Director Dept of Neurosciences) and Ann Jacoby (Prof of Sociology) both from the University of Liverpool U.K., Dr. Smita Desai, Dr. Vibha Krishnamurthy, Dr. Vrajesh Udani, Dr. Pravina Shah and Dr. Urvashi Shah.
24th June 2004 Dr. Freny Nosherwan Kohiyar passes away As noted by Dr. B.S. Singhal in her obituary in Epilepsy India Dr. Kohiyar was known for her overwhelming firmness, unstinted meticulousness and sincerity. She could always be relied to make a balanced judgment of a situation. She was associated with the IEA from its inception. She was the treasurer not only of the main Body but also the Bombay Chapter for many years.she will be greatly missed.
17th November 2004 An awareness program was conducted at CST Railway Station. 10000 pocket cards with epilepsy information as well as the 2005 calendar were distributed to lay persons. We had put up a table and banners at the venue and sold epilepsy information books.
Christmas party was held on 25th December 2004.
We continued to have Samman meetings every 2nd and 4th Saturday. 5th Saturday if any was reserved for an excursion. Every Sunday there was a session on Yoga and personality development and every Tuesday & Wednesday, individual or group counseling.
Living with Epilepsy Research The main objective of this research was to assess whether epilepsy was a disability or not and if so who were the people most affected.
A questionnaire was prepared and circulated to neurology departments all over India. Approximately 1000 forms were filled and returned. Dr. Urvashi Shah, Dr. Pravina Shah & Carol D’Souza were the main researchers involved in the project.
Medicine Subsidy: we started giving carbamazepine at a reduced price to our members.
In March 2003 we sent a proposal to the Dorabji Tata Trust for sponsorship of a school awareness research project to be conducted over a period of 2 years. This was granted.
Art Workshop Prof. Salve from J.J. School of Art along with Lopa & Dilip Mudra conducted a collage making workshop for Samman members.
4th September, 2003 Our members took part in a cultural program held at the Karnatak Society. They sang a patriotic film song along with children from the Spastics Society.
Short Films: We commissioned Maya Rao of Can&Able to make for us two short films one titled E Family Care Services and the other Caring for the Caregivers. Dr. Urvashi Shah worked together with Maya Rao to make these touching and inspiring films. The film on E Family Care Services was shown at the annual conference in Vishakapatnam.
Econ 2003 Sept 27-28 Vishakapatnam A few samman members attended this conference. Kavita Shanbhag performed a monoact on the life of a woman with epilepsy at the KS Mani session which was greatly appreciated.
In October 2003 Carol D’Souza attended a workshop in London on Improving doctor-patient interaction understanding the patient perspective organized by the British Medical Journal, UK. She was also made a member of the Patients Advisory Committee of the BMJ.
16th November 2003 Epilepsy day was celebrated with a program titled Out of the Shadows held at the YB Chavan Auditorium. Besides a cultural program there was a panel discussion. Panelists were Mr. Sureshkumar, Addl. Chief Secretary Social Justice, Govt. of Maharashtra, Dr. Mithu Alur Founder chairperson Spastics Society of India, Dr. Harish Shetty Social Psychologist, Dr. H.T. Dholakia Founder President & Managing Trustee of patients of the mentally handicapped, Ms. Arundhati Chavan, President PTA United Forum, Mr. R. Srinivasan Resident Editor Times of India and Mr. Narasimhan from Novartis India Ltd. At this event parents of people with epilepsy, who had been supportive of the IEA and had done a very good job of bringing up their child, were felicitated. They were Mr. Deshpande (Rahuls father), Mrs. Sarah Sharma (Sydneys mother) and Mrs. Misquitta (Ignatius mother).
The focus not only during the program but also during the year was on epilepsy and disability.
Foreign Visitors: During the year Drs. Eva & Fredrick Andermann and Dr. Simon Shorvan visited ECell and interacted with our members.
Support Group Meetings which were held every 2nd and 4th Saturday from 2.30 to 4.30 pm focused on cognitive development and skill enhancement.
On 1st & 3rd Saturdays from 2.30-4.30 pm a Craft Class was conducted by Kinnari Bodani & Hemali Thacker.
Kinnari & Hemali also conducted field visits on 5th Saturdays, and on Sundays from 10.30 am to 12.30 pm had a Yoga and confidence building session.
Tuesdays were reserved for E Family Care Services which included medical, psychiatric and psychological evaluation and therapy for children and adults with epilepsy and their families. Dr. Nilesh Shah Psychiatrist, Neuropsychologist Dr. Urvashi Shah, Psychologists Shweta Kadaba, Ruhaina Hydari, Sheetal Agarwal & Carol D’Souza volunteered for this purpose.
17th March, 2002 Training for E-Volunteers at Worli by Dr. P.U. Shah, Bina Sawant, Ruhaina Hydari, Shweta Kadaba and Sheetal Agarwal.
Every Thursday Child Guidance Clinic was conducted by Ms. Bina Sawant.
AGM cum Picnic was held on 9th January 2002 at the Kalaniketan farmhouse in Pen which for our members is synonymous with fun, games and good food!
On 12th February 2002, Carol D’Souza participated at the Global Campaign Against Epilepsy (GCAE) anniversary held at the Van Gogh museum in Amsterdam which entailed presentations by eminent people involved in the GCAE in the presence of the European Press.
August 14, 2002 Information and awareness campaign at Churchgate railway station. Posters on epilepsy were prominently displayed and 5000 epilepsy information pocket sized cards were distributed to the public.
Comprehensive Epilepsy Course 15th September to 6th October 2002. There were 51 participants (mostly para medicals) attending this course which was held on 3 Sundays and 2 Saturdays. Except for the first Sunday which was held at ECell the rest of the sessions were held at the Lecture Theatre at KEM Hospital Parel. There were 12 eminent faculty members. Dr. Pravina Shah and Dr. Urvashi Shah planned and coordinated the program which focused on the total management and care of people with epilepsy. Excellent feedback was received from the participants.
11-13th September, 2002: Carol D’Souza participated in a Leadership workshop on International Capacity Building at New Orleans organized by the Epilepsy Foundation of America (EFA) and thereafter at the EFA Annual Conference.
E-Con 2002: 12 Samman members attended this conference held in Lucknow. They put up a skit at the Dr. K.S. Mani Patients Session.
16th November 2002 from 9 a.m. to 9 p.m. we had an Epilepsy Phone-In program. 11 neurologists, 1 psychiatrist and 1 neuropsychologist came to ECell at different timings and answered incoming calls from patients and family members. We obtained an extra phone line from MTNL for that day. Announcements about the program were through press, radio and posters put up at Hospital OPDs. We also had an announcement on one hoarding obtained free of charge by Ignatius Misquitta. A total of 78 people had their calls answered.
Indradanush : National Epilepsy Day was celebrated on 17th November 2002 with a fun fair cum exhibition and sale of handicrafts and food items prepared by Samman members. At this celebration we inaugurated our website: ieasamman.org with Kavita Shanbhag being the webmaster.
28th December 2002 We had a Christmas party for our members and their families, replete with Santa Claus and gifts!
Media Coverage 14th November a large article about Samman appeared in the Times of India in the column that chronicled brave initiatives and sunshine stories. One article about Ignatius life story appeared in the Bombay Times.
ECell activities for 2001 continued as per the 2000 format. Samman Meetings however focused on art and craft taught by Kinnari Bodani and Hemali Thacker. There was one guest lecture by Ms. Vandana Garware and Ms. Ramni from National Job Development Centre of Spastic Society and on another occasion 20 street children and few volunteers from Salaam Baalak Trust visited ECell and interacted with our members. Kinnari and Hemali also conducted yoga classes every Sunday. Carol & Sheetal conducted counsellng and psychotherapy on Tuesdays and Wednesdays respectively.
ILAE/IBE/WHO Global Campaign Against Epilepsy (GCAE): Carol D’Souza was invited to present on Living with epilepsy in the world today at the 2nd phase launch of the global campaign held in Geneva on the 12th & 13th of February 2001. Her advocacy skills were greatly appreciated. She was also part of a select group that participated in the global press conference after the launch in Geneva. Carol was also invited to present at the GCAE session in Buenos Aires in May 2001.
During the year, on separate occasions, we had 3 international visitors to ECell: Dr. Bittencourt, Dr. Jerome Engel and Diana Sawyer. They were all given the traditional Indian welcome and educated about our activities. Our visitors had words of encouragement and appreciation for all our members.
21st August 2001 the chapter mourned the passing away of Dr. Piloo E. Bharucha.
17th November 2001 Dashak Kiran Samman completes 10 years. At the program members presented what they learnt during the year yoga, singing, story telling etc. Kavita Shanbhag and Mukesh Shah also performed a skit that portrayed all the major events organized in the last 10 years.
Econ 2001 13th to 15th December 2001: A lot of time was spent getting sponsorship for the national epilepsy conference. Econ 2001 President, Organizing Secretary and Joint Organizing Secretary were Dr. B.S. Singhal, Dr. Pravina Shah and Dr. S. Ravat respectively. Gifts to all delegates were made by Samman members. The scientific content and social program were highly appreciated by the delegates as also the preconference EEG workshop held on the 13th conducted by epileptologist Prof. Colin Binnie.
The book Conquering Epilepsy edited by Carol D’Souza was launched at Econ 2001 by Actress Waheeda Rehman during the Patient Forum. It contained stories of people living with epilepsy. The Times of India, Maharashtra Times and Janmabhoomi brought out articles on ECon 2001.
