In spite of the Lockdown we had a year full of activity – given below is a synopsis:

Date	Venue	Activity
5th Jan	ADAPT, Bandra, Hosts: Carol D’Souza & Mahesh Palan for Samman Assn, around 60 members attend	Support Group meeting Topic: Thanksgiving & New year party
15th Feb	ADAPT, Bandra, Hosts: Carol D’Souza & Mahesh Palan for Samman Assn, around 60 members attend	SG Mtg – Valentine Party with games, lunch & discussion on What Love means to me & People who I Love & Why?
27th Feb	Bandra	Medicine Reimbursement
7th March	ADAPT -Bandra, Hosts: Carol D’Souza & Mahesh Palan, 30 members attend	SG Mtg,Topic ‘Happiness is the best anticonvulsant’ & celebratioin of womens’ day & members’ birthdays
15th March		Lockdown due to coronavirus from 16th March 2020
6th April	Online meeting, Host: Samman, Carol D’Souza	Dr. Pravina Shah’s birthday celebration
14th April	Online meeting Host Desiree Punwani for Samman Assn	Support Group Meeting – Topic: Emotional Freedom Therapy
26th April	Host: Carol D’Souza	Support Group Meeting – Topic: Our journey during the lockdown
6th May	Hosted by Carol – Attendees: Dr. Shah, Dr. Jayanti, Pooja, Mahesh, Carol	Samman Work Group meeting on Online
22nd May	Hosted by Carol – Attendees: Dr. Shah, Pooja, Mahesh, Carol	Samman Work Group meeting on Online
24th May	Review by Urvashi, Antara, Carol	Epilepsy & Employment Questionnaire
30th May	Online meeting Host Desiree Punwani for Samman Assn	Support Group Meeting – Topic: Forgiveness
14th June	Online meeting Host: Samman, Conducted by: Dr. Urvashi Shah	SG Mtg – MAST LIFE SERIES – Topic Medication
15th June	Review by Drs. Jayanti & Urvashi, Antara, Carol	Epilepsy & Employment Questionnaire
18th June	Attendees: Drs. Pravina Shah, Jayanti, Urvashi, Pradnya, Joy and Pooja & Carol	Managing Committee Meeting
20th June	Online Meeting Host Dr. Urvashi Shah for Samman Association	SG Mtg – MAST LIFE SERIES – Topic ‘Memory’
22nd June	Review of previous research – host Antara	Epilepsy & Employment Questionnaire
26th June	Online Meeting Host Dr. Urvashi Shah for Samman Association	SG Mtg – MAST LIFE Series – Topic ‘Acceptance’
5th July	Online Meeting Host Dr. Urvashi Shah for Samman Association	SG Mtg – MAST LIFE Series – Topic ‘Adjustment’
8th July	Online Meeting Host Carol D’Souza for Samman Association	Support Group Meeting only for People with Epilepsy, married & unmarried – Topic ‘Marriage’ where The unmarried were given the opportunity to question the married
12th July	Online Meeting Host Dr. Urvashi Shah for Samman Association	SG Mtg – MAST LIFE SERIES – Topic ‘Stress’
15th July	Online meet Host Samman Assn – Dr. Pravina Shah interviewed by Carol D’Souza followed by Q&A	SG Mtg for Caregivers- Topic Marriage of People with Epilepsy
19th July		SG Mtg – MAST LIFE SERIES – Topic ‘Treatments in Epilepsy’
26th July	Online meeting, Host Uttejan	SG Mtg – Topic Mind Knowing
29th July	Online meeting Host: Dr. Pravina Shah for Samman Assn	SG Mtg – Topic Antakshri
30th July	Online meeting Hosted by Samman member Ankush Talesra	SG Mtg – Topic ‘Getting to know each other – our joys & difficulties’ for PWE under 50 yrs
2nd Aug	Online Meeting Host Dr. Urvashi Shah for Samman Association	SG Mtg – MAST LIFE Series – Topic ‘Lifestyle’
5th Aug	Online Meeting Host Carol D’Souza for Samman Association	SG Mtg – Topic ‘Conflicting Thoughts / Fear’
16th Aug	Online Meeting Host Dr. Urvashi Shah for Samman Association	SG Mtg – MAST LIFE Series – Topic ‘Understanding Meditation’
23rd Aug	Online Meeting Host Dr. Urvashi Shah for Samman Association	SG Mtg – MAST LIFE Series – Topic ‘Locus of Control & Meditation’
30th Aug	Online meeting, Host Uttejan	SG Mtg – Uttejan Lockdown Talent Meet
5th Sept	Online Meeting Host – Sanvedana Foundation	SG Mtg – Marriage & Epilepsy
6th Sept	Online Meeting Host Dr. Urvashi Shah & Carol DSouza for Samman Association	SG Mtg – MAST LIFE Series – Topic ‘Locus of Control’ & ‘Who Am I’
13th Sept	Online Meeting Host Dr. Urvashi Shah for Samman Association	SG Mtg – MAST LIFE Serive – Topic ‘Family & Epilepsy’
27th Sept	Online Meeting, Host: Uttejan	SG Mtg – Topic ‘Mindpathy’ – Understanding Your Emotional Health
4th Oct	Online Meeting Host Dr. Urvashi Shah for Samman Association	SG Mtg – MAST LIFE Series – Topic ‘Forgiveness & Empowerment’
31st Oct	Online Meeting, Host: Uttejan	SG Mtg – Topic ‘Life Skills for Vocation’
1st Nov	Online meeting Hosts – IIT Techfest & Samman Association	Online interaction between an Epilepsy NGO from Spain, Samman Association & an interview with Bollywood actress Fatima Sana Sheikh
2nd Nov	Online Meeting Host – Sanvedana Foundation	SG Mtg – Topic ‘Parenting’
8th Nov	HEAL – Help Epilepsy Awareness Last – IIT Techfest & Samman Association Online Social Initiative	Ep Awareness program conducted online for 40 schools / colleges. Participation of over 40 neurologists from various parts of India. http://tiny.cc/Samman
9th Nov	Online Meeting Host Dr. Pravina Shah for Samman Association	SG Mtg. – Topic ‘Challenges I have Overcome’ – Sharing & learning from each other
17th Nov	Host – Indian Epilepsy Society, Courtesy Sanofi	Jonty Rhodes & 5 Eminent Neurologists talk about Epilepsy
29th Nov	Host: Uttejan	SG Mtg – Topic ‘Developing Adversity Quotient’
4th Dec	98 teachers attended this program conducted by Dr. Pradnya Gadgil on behalf on Samman Association. Their feedback on the program has encouraged the BMC to give	Epilepsy Education for BMC Schools Key Opinion Leaders
11th Dec	Host – IBE – 10:00 hrs CET	IBE Global Teams invite to KOLs amongst people with epilepsy
13th Dec	Host – Carol D’Souza for Samman	SG Mtg – E CHARCHA – Epilepsy Counsellors Yashoda Wakankar and Carol D’Souza to discuss the Problems faced by people with epilepsy and ways to deal with them
14th Dec	Host – IBE – 15:00 hrs CET	IBE Global Teams invite to KOLs amongst people with epilepsy
20th Dec	Host – Carol D’Souza for Samman	SG Mtg – E CHARCHA – EFT Therapist Desiree Punwani and Carol D’Souza to discuss ‘Living in Flow’

APRIL 2019

14 April – Epilepsy Education for Doctors & Epilepsy Clinic at Dahanu District Hospital: Approx. 30 doctors attended the epilepsy education program at the Dahanu District Hospital conducted by Dr. Pradnya Gadgil and Dr. Jayanti Mani after which they along with Dr. Neeta Sutay conducted the first epilepsy clinic in Dahanu. Interns from J.J. Hospital and few Samman members served at the registration and medicine counters. Medicines were given to the patients free of charge.
14 April – Epilepsy Clinic, Talasari: On the same day another epilepsy clinic was held at Ecoland Farms, Talasari where Dr. Pravina Shah and Samman volunteers attended to 26 patients.

MAY 2019

11th May – Support Group Meeting at KDAH: Enthused with the success of Samman epilepsy support group meetings, Dr. Jayanti Mani and Dr. Pradnya Gadgil along with the Psychologists from Kokilaben Dhirubhai Ambani Hospital held a meeting for patients and caregivers (60 attended). Carol D’Souza was asked to begin the meeting by sharing her own experiences, after which there was a lot of sharing from the other patients.
26th May – Rural Epilepsy Clinic in Pen: Over 100 patients were attended to and each given 3 months medicines. Dr. Pravina Shah and 2 Resident Neurologists from Fortis Hospital and Physiotherapist Dr. Dhruv gave their time to these patients and Samman members helped with medicine and file distribution.
Support Group Meeting was cancelled as most members were on holiday.

JUNE 2019

1st June – Support Group Meeting: 20 people attended this meeting on ‘Goal Setting’ facilitated by Carol D’Souza.
20th June – Samman Association Annual General Meeting: 38 members attended along with a few caregivers. After a healthy discussion on future activities and needs of members of Samman Association, we had a sumptuous lunch at ADAPT.

JULY 2019

7th July – Continuing Medical Education for Doctors & Nurses at Dahanu District Hospital & Epilepsy Clinic – 70 patients attended this clinic and 3 months medicines given to them according to the need. Dr. Pradnya Gadgil and Dr. Jayanti Mani attended to the patients.
7th July – Epilepsy Clinic at Talasari – 27 patients attended this clinic and were given 3 months medicines and lunch.
13th July – Support Group Meeting at ADAPT – Our Support Group Meeting in July took place on one of the heaviest rain days – on 13th July, when Mumbai public transport system was severely disrupted. Yet people who attended this meeting, which had ‘Fear & How I Overcome it’ as the topic, came from far and wide (Thane, Navi Mumbai etc).

AUGUST 2019

3rd August – Support Group Meeting at ADAPT: 30 members attended this meeting. Due to heavy rains, a lot of members couldn’t make it to the last SGM hence the topic on Fears was repeated.
18th August – Rural Epilepsy Clinic at Pen: 106 patients attended this clinic and 3 months medicines were given to them. They were also given a mini lunch.

SEPTEMBER 2019

14th September – Support Group Meeting: Around 33 members attend; topic: ‘What Disturbs Me & What I Do or Can Do About It”. After the meeting we received the
following feedback: “Today in this meeting I learned you have to face fear yourself”, “Thanks Carol Madame and Samman I have learnt to face my fears by being who I am, not comparing myself with others and celebrating life”, “truly the meeting was a great experience and a lot to be learned from all”, “Loved today’s meeting, feels great to be part of Samman family”, “Thank you so much Carol, I learned from you a lot. . And everyone rocks..Samman people are very talented..” “thank you so much Carol for inviting me,, Maheshji thank you so much for encouraging me to join”.
22nd September – Monsoon mela: Exhibition-cum-Sale organized for NGOs and others by St. Joseph’s Ex-Students Association, Bandra. Many thanks to Carol Dsouza & the St. Joseph’s Alumni who had reserved a stall for us free of cost. Our members Nuzhat Hamdare & Tanvi Marathe sold their products whilst Mahesh, Minal, Meena & Christopher assisted and distributed epilepsy brochures and books to raise awareness.
28th September – Movie & Lunch: Around 30 Samman members enjoyed the movie “Chicchore” and the lunch and get-together that followed which was organized by the Mita Nandi Foundation.
29th September – Rural Epilepsy Clinic at Sub-District Hospital, Dahanu: Over 70 patients were attended to by Dr. Pradnya Gadgil and Dr. Jayanti Mani. Dr. Venkatesh
from Fortis hospital & Samman members assisted with registration and medicine distribution.
29th September – Rural Epilepsy Clinic, Talasari: 23 patients were attended to and each given 3 months Medicines. Dr. Pravina Shah & Dr Wagle attended to the patients & 4 Samman volunteers were at the registration & medicine counters. Transport was arranged by Lupin Pharma for both camps.

OCTOBER 2019

4th October – Celebration of Cerebral Palsy Day: Samman members immensely enjoyed this function organized by the Mita Nandi Foundation at ADAPT, where our President Dr. Pravina Shah distributed Achievement Awards & Certificates. Thereafter all of us proceeded to the Bandra-Worli sea link area to glimpse the green illumination of the Sea link pillars, lit up beautifully to mark Celebral Palsy day.
19th October – Support Group Meeting – Attended by 23 members who had a discussion the ‘Managing Relationships’. As always there is a lot of enjoyment and bonhomie after the meeting.

NOVEMBER 2019

10th November, Rural Epilepsy Clinic in Pen – 102 patients attended this camp and were given 3 months’ medicines. Samman had been supporting clinics in this area since 2007 and we informed patients that this would be the second last clinic, as we wanted to focus such support at another location.
16th November, Support Group Meeting – 45 members were educated about the Brain & Its Functions in a simple and understandable manner by Carol D’Souza. Dr. Sujata Kanhere and Dr. Pravina Shah also came for the meeting and answered the many questions the audience had.
17th November, Celebration of National Epilepsy Day – The Epilepsy Foundation invited Samman members to jointly celebrate with them at the SP Jain Auditorium at Bombay Hospital. Carol D’Souza spoke about Samman Association activities at the event. The Epilepsy Foundation, amongst other things, is doing commendable work at raising epilepsy awareness in Mumbai City and arranging and conducting epilepsy clinics in rural areas as part of the National Rural Health Mission.
21st November, Epilepsy Education Programme for ASHA Workers at Vedantaa Hospital, Dahanu: Over 420 ASHA workers were provided basic training about epilepsy by Neurologists Dr. Pradnya Gadgil and Dr. Jayanti Mani. Samman Association Members, Pooja Nandi & Mahesh Palan assisted the doctors in conducting the programme.

DECEMBER 2019

14th December – Support Group Meeting: This was a Q&A session on ‘What I want to know about epilepsy’.
15th December – Rural Epilepsy Clinic, Palghar: 23 Patients attended this clinic and given 3 months’ medicine. This was the last camp in Ecoland Palghar . The files were handed over to the patients and they were told to report next to the Dahanu District Hospital. This decision was taken to make it easier for patients to travel to the clinic, as Ecoland was proving to be quite remote for most, the reason why the attendance was not growing.
15th December – Rural Epilepsy Clinic, Dahanu District Hospital: 96 patients attended this clinic out of which 60 were new cases. Five Interns from EEG department of
Nair Hospital assisted us at the registration counter.
18th December – Meeting with representatives of UCB India: Dr. Pravina Shah, Carol D’Souza, Pooja Nandi & Mahesh Palan met with 1) Bruno Standaert : Head of
Business Development, M& A and Alliance management International Market-UCB and 2) Kanchan Waikole Head- Marketing, Alliance and Business Intelligence -UCB
to help them understand how they could raise epilepsy Awareness, and improve Medical Access, Availability and Affordability of Treatment amongst low income
patients.

JANUARY 2020

5th January – Support Group Meeting & New Year Party: Members gave thanks for the year that went by detailing events they were grateful for. This was followed by a
sumptuous lunch. 60 members attended and enjoyed the party.

FEBRUARY 2020

9th February – Rural Epilepsy Clinic in Pen: Around 98 patients attended this 64th clinic, the last one in Pen. It was an emotional moment for everyone as attendees had become more like family members, especially those who regularly attended for the last 12 years. However, it was also heartening to note that many who came consistently, had been doing very well with their seizure control, a couple of them had had successful surgery at KEM Hospital, Mumbai, some had gotten married and had children as well.
15th February – Support Group members had a Valentine’s Day Celebration: Around 60 members attended the support group meeting and played Valentine games with prizes donated by Desiree & Daani Punwani. People also wrote on the Board ‘What love meant to them and who they loved and why’. Everyone had loads of fun and enjoyed the meal and deserts that followed!

MARCH 2020

7th March – Support Group Meeting: Fortunately, we had our meeting early! Don’t know when we would physically meet again. Around 30 members attended this meeting where Carol presented on “Happiness being the best anticonvulsant”. A discussion followed on how best to condition oneself to find the place of calm to prevent seizures. We also celebrated women’s day and members’ Birthdays and cut a cake as well.

SUPPORT GROUP MEETINGS

These meetings are held once a month at our Bandra Epilepsy Centre as well as at Fortis Hospital, Mulund and Manav Kalyan Kendra, Dahisar.  The success of these meetings motivated us to start similar support group meetings at Kokilaben Dhirubhai Ambani Hospital, Andheri beginning April 2019.

 

RURAL EPILEPSY CLINICS

Every quarter we have had one epilepsy clinic in Pen and one clinic in Palghar.  Over 100 patients attend the clinic at Pen.  As the clinic in Palghar continues to have a maximum of 35 patients, we are considering shifting to a more accessible venue.  At the last visit to Palghar we had 2 clinics simultaneously: one in Dahanu and the other at Talasari.  However, what is well achieved in Palhghar is the doctor / nurses / ASHA workers education program that happened through the year.

SOCIAL MEDIA

Our social media (Facebook, Instagram, WhatsApp) sees regular interaction with our members and members of the public.  We have made short educational videos for use on social media.  Our website (epilepsymumbai.org) as well is continually kept up to date.  Most active are the daily posts on our WhatsApp groups. We have a group for Mumbai People with Epilepsy & Caregivers, another for the KDAH (Kokilaben DA Hosp, Andheri), Manav Kalyan Hosp. Dahisar, Pen Patients & Palghar Patients.

NATIONAL AWARENESS WEEK (NOVEMBER 2017)

Our aim this year was raising awareness via social media. We decided to pose challenges on Facebook which urged the audience to advocate for epilepsy and be an integral part of destigmatizing it. In the course of one month and eight online challenges, we were able to shortlist three of our members whose meaningful participation won them exciting prizes. On 17th November which is national epilepsy day we had the screening of ‘Shahid’, the critically acclaimed film. On 18th November at our 59th epilepsy clinic at Pen (which was attended by 112 patients) we had special treats for the patients. Awards for the on line contest was given on 24th November, where all gathered to celebrate with games and a lunch.

RESEARCH

As employment of people with epilepsy is a major problem, we have decided to conduct a research focused on Identifying the facilitating and hindering factors in obtaining, retaining and full participation in employment of adults with epilepsy’.  We have recently finalized the research questionnaire after many meetings, deliberations, and a pilot study of 20 persons and are in the process of getting ethics committee approvals.  For this purpose, we have hired a psychologist part time and 2 persons from TISS will be helping with the analysis.  We also coordinated with the Palghar District administration to conduct a research on the incidence of epilepsy in the entire Palghar District.

MUMBAI MARATHON

Samman Association took part in the Tata Mumbai Marathon.  A lot of effort went into getting sponsors and runners for this event which generated an income of Rs.1,80,000/-.

OVERNIGHT WORKSHOP IN DEOLALI

On 16th & 17th March 2019, we had a workshop in Deolali at the Leslie Sawhney Center.  40 people with epilepsy attended this workshop which had sessions on The Importance of Sleep and The Importance of Exercise which was conducted by Dr. Joy Desai on day 1.  Day 2 started with a yoga session.  The rest of the morning sessions was conducted by Dance Movement Psychotherapist Devika Mehta of ‘Synchrony’. This fun method of learning, focused on improving self-confidence, self-awareness, interpersonal communication and social interaction.

TIE UP WITH 1MG

1mg has assigned a WhatsApp number 8104375305 (as our members are familiar with this)  to our NGO account to receive prescriptions from patients and their families and friends. Photos of prescriptions are sent directly via WhatsApp / SMS to the assigned number. Deliveries are made directly to the patients given address and money collected.

SAMMAN STAFF

In November we hired Sheetal Pereira to take over from both Carol D’Souza and Pooja Nandi.  Both Carol and Pooja continue to actively volunteer with Samman Association.  Additionally, we have a college student Siddhita Sonavane who contributes towards our Facebook and Instagram posts.  Antara Sapre, a psychologist has been hired part-time for 6 months to conduct the employment research and help with documentation, analysis and reports.

 

SUPPORT GROUP MEETINGS

These meetings are held once a month at our Bandra Epilepsy Centre. Topics discussed were as follows:

1. April & May – Managing the Ego
2. June – Flowers & Trees in Bloom in Mumbai
3. July – Mock Interviews – Preparing Self & Presentation & Learning from Job Rejections
4. Aug – What Independence Means to Me
5. Sept – Epilepsy & Sleep
6. Oct – Discussion about Nov Epilepsy Awareness Programs
7. Nov – Money & My Relationship With it
8. Dec – Learning from the life of Anura Kenkre
9. Jan 2018 – Habits we are willing to let go and new ones we need to make
10. Feb – IBE Photo Competition
11. Mar  – Picnic at Greenvillage Resort, Gorai

 

RURAL EPILEPSY CLINICS

Every quarter we have had one epilepsy clinic in Pen and one in Palghar where neurologists attend to patients and give 3 months medication:
2nd April @Pen – 111 patients and their caregivers attend the clinic
7th May @Palghar – 24 patients attend
25th June @Pen – 94 patients braved the heavy rain and were there sharp at 8 am.
30th July @Palghar – 35 patients attend
17th Sept @Pen – 106 patients attend
29th Oct @Palghar – 35 patients attend
19th Nov @Pen – clinic completes 10 years with a small celebration with 107 patients.
Caretakers at Pen were given gifts
21st Jan 18 @Palghar – 32 patients attend
4th March @Pen – 90 patients attend

EPILEPSY AWARENESS PROGRAMS

BREAKING DOWN MYTHS & EDUCATING ABOUT FIRST AID

7th April @Rotary Club Juhu – Our Secretary Neurologist Dr. Jayanti Mani spoke to the audience about epilepsy and first aid
26th April @Karthika High School & Jr. College, Kurla – Neurologist Dr. Amit Vatkar raised epilepsy awareness of 75 teachers there.
21st July @Ch. Shivaji High School, Ghatkopar East – Neurologist Dr. Amit Vatkar raised epilepsy awareness amongst their 9 & 10th grade students and teachers.
12th August @GV School, Thane – Pediatric Neurologist Dr. Rima Choudhary raised epilepsy awareness amongst their teachers and staff.
19th August @Ravi Kiran High School, Vikhroli – Neurologist Dr. Mehboob spoke to 75 students and teachers.
21st September @Goregaon – Pediatric neurologist Dr. Pradnya Gadgil talks to theirstudents.
27th September @VES Tulsi Educational Institute – Neurologist Dr. Jayanti Mani speaks to the college students and professors.
25th March @Fortis Hospital, Mulund – Purple Day Epilepsy Awarness Program organized by Dr. Pravina Shah

SOCIAL MEDIA

With more and more people becoming technology savvy, Samman started an Instagram account. This is in addition to Facebook, a website and a blog and the many WhatsApp Groups we have.

NATIONAL AWARENESS WEEK (NOVEMBER 2017)

11th November @ADAPT, Bandra – Yashoda Wakankar spoke to our members and their parents on Bettering Your Marriage Prospects
12th November @Radio City 91.1 FM 3-5 pm Interview with our President Dr. Pravina Shah.
14th November @ADAPT, Bandra – Neuropsychologist Dr. Urvashi Shah educated Newly diagnosed patients and their caregivers on all aspects relating to living with
epilepsy.

MUMBAI MARATHON

21st January 2018 : Running for Samman was Dr. Jayanti Mani, Pooja Nandi, Rajiv Varaiya, Anura Kenkre, Anthony & Mrs. Goveas, Ignatius Misquitta, Karina Pandya,
Chintamani Vartak, Tasneem & Murtuza Rajkotwala and Srinivasan Iyer. Jayanti & Pooja successfully completed the 21km and 10km respectively for our Association
whilst the others were our Dream Runners who raised epilepsy awareness through slogans and banners. We thank them for their efforts and also very specially thank
all our sponsors.

 

 

Mumbai Marathon January 19, 2014

The Mumbai Marathon is a big fundraiser for us.  We sold 25 bibs, 15 to GlaxoSmithKline Pharmaceuticals Ltd alone and another 10 bibs bought from employees of Mindshare.

Feb 1^st & 2^nd Econ 2014 at Kolkata

Few Samman members went to Kolkata for Econ 2014.

 

Dr. Pradnya Gadgil held an awareness program with the BMC education officers which was very well received.

Rural Epilepsy Clinics held in Pen:

4 Clinics were held during the year on : 9^th March 2014, 1^st June 2014, 24^th August, 2014 and 16^th November 2014  – Approx 85 patients attended each clinic where medicines were given free or at a nominal cost.

Support Group Meetings were held every 4^th Saturday. Topics covered during the meetings were:

1. Understanding your blood report: Carol D’Souza – Jan ‘14
2. Requirements for disability certification: Kavita Shanbhag & Dr. Bina Sawant – Feb ‘14
3. Sharing on the women who have inspired us : led by Carol D’Souza – March ‘14
4. 22^nd March ’14 – visit to Sarah Sharma’s home to celebrate her birthday.
5. April ’14 – birthday celebration at Dr. Shah’s home in Vikhroli
6. May 4, Minal Mahesh get married
7. Meeting organized at KEM Hospital – Dr. Sangeeta Ravat & Dr. Urvashi Shah – 9^th May
8. Needs & issues of people with epilepsy – Christopher Fernandes – 12^th July
9. Hypertension, thyroid & diabetes – talk by Dr. Swati – 24^th July
10. Employment – Kavita Shanbhag – 23^rd August
11. Trip to Mani Bhavan – led by Christopher Fernandes – 13^th September
12. Diwali Party – 18^th October
13. Visit to Borivali National Park & Kanheri Caves – organized by Christopher Fernandes – November 2014
14. Christmas cum new year party held on 27^th December, 2014

 

Epilepsy Awareness Week Programs:

Christopher organized 3 epilepsy awareness camps : the first on Tuesday 18th November at Siddhivinayak Temple, Prabhadevi, this was followed by a program at the Mumbai Metro, Ghatkopar on Thursday 20th and the third one was held at Haji Ali on Friday 21st. We were given a table to display our material and our members: Ashish, Kalpesh, Kavita, Manohar, Ignatius Misquitta, Nola Shah, Yogita Lad, Gia Lad distributed calendar cards and educated people about epilepsy. On 17th Nov, Kavita tweeted Krutika’s slogan “National Epilepsy Day – Don’t be scared, Let’s Care” which was retweeted by others.

 

We are also proud of Shenaz who was felicitated at Shree Chitra, Trivandrum, on 17th November, for winning the Outstanding Person with Epilepsy Award and Keyur who won the runners up prize for the Badminton tournament organized by Epilepsy Foundation. Congratulations to both of them.

 

Exhibiton Cum Sale: We participated in the Indus Festival of Charities Exhibition cum Sale for NGOs held at YMCS end November 2014.

During the whole year every Thursday we had Divine Soul Healing

A Divine Soul Healing Teacher Sarosh Buhariwala spends an hour or two each Thurday afternoon for Divine Soul Healing for our members.

 

 

Counselling & yoga are ongoing activities.

Topics covered during support group meetings were as follows:

Date    

14th January                Planning for Econ 2012

28th January               Income Generation Schemes

10th February              Income Generation Schemes

24th March                  Becoming an Avon Distributor – Priti Avon Bus. Dev. Mgr.

28th April                     Dr. Pravina Shah shares her important learning experiences

26th May                      ABT Games – Kavita Shanbhag

9th June                        Sharing stories with a moral – facilitator Salil Kulkarni

23rd June                      Changing habits that don’t work for us – Carol D’Souza, Kavita Shanbhag

14th July                       Understanding epilepsy – Carol D’Souza

The Chapter was invited to raise epilepsy awareness amongst employees of the Essar Group, on 3rd February and 10th February 2012 at their offices at Mahalaxmi and Bandra Kurla complex.  Carol D’Souza conducted these programs.

E-Con 2012 – 25th & 26th of February : 15 Samman members / caregivers attended this  enriching and well organized conference.   For 3 days, prior to the conference, we organized sight seeing tours for our members which covered Backwater Kochi City Tour, Cherai Beach, Athirampally waterfalls, the elephant training center and a visit to Kaladi –  Adi Shankara’s birth place.

BLOG: Ecellin.wordpress.com set up and managed by Carol D’Souza is regularly updated and continues to receive good feedback.

Rural Medical Clinics at Pen    

Camp  No.	30	31
Dates of camps	4.3.12	27.5
Total New + follow-up	87	96
Total Non-Epilepsy	3	4
Total Ep. + Non-Epilepsy	90	100
New Cases	9	12
Follow-up ep cases	78	84

\E-Empowerment Program : We decided to support some of our members who have active seizures.  These members who travel to ECell in spite of seizures, are given a token remuneration.  They make paper bags and crochet items at ECell and also help in any routine work they are capable of doing.  This program started in April 2012 and continues to date.

At our support group meetings the following topics were discussed:

8th Jan (New Year Party)
22nd Jan Reactions to different situations using role play
12th Feb Discussion on trip to Ludhiana for ECon
12th March Discussion on my relationship with God
9th April “Our Best & Worst Holidays” – All Samman Members
23rd April Guest lecture by Orthapaedic Surgeon Dr. Milind Sawant on Arthritis Prevention & Management.
14th May “Let’s Change Our Lives” by Psychologist Carol D’Souza
28th May Guest lecture by Yoga Consultant Shilpaben Joshi on “Spirituality in Daily Living”
9th July Carrom Tournament
23rd July Art Becomes Therapy Session – Kavita Shanbhag
13th August Friendship Day Celebration – A sharing of the good we see in our friends at ECell. We also tied friendship bands on each other.
10th September Ganpathi Painting Competition
24th September “From Helplessness to Control” – Carol D’Souza
8th October Sale of diyas made by our members. A game that helped us know each other better conducted by Carol D’Souza
22nd October Rangoli competition
12th November Training for the dance performance for epilepsy week conducted by Divya
10th December Christmas party

Counselling and yoga continued at ECell throughout the year conducted by Carol D’Souza and Sharvari Khot respectively.

We were deeply saddened on 26th January, 2011 when our member Sydney Joseph passed away after a brief illness.

E-STAR (Epilepsy Student & Teacher Awareness Reachout) : We had two school awareness programs for students of 8th & 9th standards at:
Seventh Day Adventist High School, Sanpada, Navi Mumbai on 7th January 2011 &
Podar International School, Nerul, Navi Mumbai on 10th January, 2011

Uttejan – (Positive Reinforcement) the Thane Epilepsy Support Group celebrated their 1st anniversary on February 6 2011. Many of our members joined them in their celebration.

E-Con 2011, 25th & 26th of February : 13 Samman members / caregivers attended this very enriching and well organized conference where Dr. Urvashi Shah was given the Bajoria Award. Members also enjoyed the visit to the Golden Temple in Amritsar and the trip to Wagah Border.

Disability in Epilepsy -As the Amendments of the Rights of Persons with Disability Act 1995 is being taken up again, Kavita Shanbhag and Carol D’Souza attended a meeting held for this purpose at Nagpur on 22nd and 23rd March.

Rural Epilepsy Camps, Pen : The comprehensive epilepsy team conducted 6 epilepsy clinics at Pen as follows:

 

Camp  No.	24	25	26	27	28	29
Dates of camps	13.2.11	10.4	5.6	31.7	9.1	     18.12
Total New + follow-up	94	82	84	75	91	99
Total Non-Epilepsy	4	1	4	6	5	4
Total Ep. + Non-Epilepsy	98	83	88	81	96	103
New Cases	11	6	4	3	9	6
Follow-up ep cases	83	76	80	72	82	93

 

Epilepsy Training & Awareness Programs for Health Workers: Training programs for health workers from different regions of India was organized by the National Association for the Blind. On 13th June 2011, 11th July 2011 and 7th November 2011 we were invited to educate them about epilepsy management and treatment. Dr. Pravina Shah, Dr. Sushil Tandel, Kavita Shanbhag and Carol D’Souza participated in these training programs.

Abbott India Ltd invited Dr. Pravina Shah and Carol D’Souza to educate their Sales Representatives on 5th August.

During the inaugural ceremony of the International Epilepsy Congress in Rome on 28th August Dr. Pravina Shahreceived the Social Accomplishment Award. This award is given jointly by the IBE and ILAE, every two years to an individual to recognize his or her outstanding personal contribution to activities that have resulted in a significant advance in the social well being and or quality of life of people with epilepsy. The Chapter was extremely happy that Dr. Pravina Shah who is well known as a humanitarian and esteemed neurologist, received this international recognition.

Art Based Therapy (ABT) : Using art forms such as music, drama and visual arts Kavita Shanbhag conducted 30 therapeutic sessions during the months of March, April, August & September 2011. Samman members enthusiastically participated and enjoyed the ABT sessions which helped improve their self expression and reconnected them with various art forms.

Sheltered Work : From April-September 2011 we received packaging work from a toy manufacturer. 5 of our members did this work at ECell for which they were paid by the toy manufacturer.

Epilepsy Month
15th November – Press Conference held at the Press Club of Mumbai on the latest on Epilepsy Management & Treatment and achievements of the Bombay Chapter. Press articles appeared in the Indian Express, Maharashtra Times & Sakal newspapers.

16th November – Interview with Kavita Shanbhag was aired on Rainbow FM News Channel which is a Marathi channel with a large rural and urban reach in Maharashtra.

16th & 17th November – epilepsy awareness drive at Highstreet Phoenix a large and busy mall in Parel.

19th November E 40-20 celebrations 40 years of IEA and 20 years of Samman
at Hotel Krishna Palace with the theme ‘Epilepsy & Teens’ – Dr. Joy Desai spoke about challenges faced by teens; Carol D’Souza presented on Bombay Chapter’s achievements; Dr. Ravin Thatte spoke on ‘How to refuse to be unhappy’ and Samman members put up a dance performance. Achievement Awards were given to Santosh Tholar and Keyur Waghela and Caregiver of the Year award was given to Sachin Khot. Samman members felicitated Dr. Pravina Shah for receiving the Social Accomplishment award.

Tamana Jotwani who interned with us from 19th October to 19th November 2011 organized an epilepsy awareness program at her college (Jai Hind) on 1st December, 2011. Dr. Pravina Shah and Carol D’Souza participated in this program.

Exhibition cum Sale – December 6, 2011 – Once again we enjoyed participating at the Indus Festival of Charities held at YMCA Colaba.

During the year we have:

• Given information over the phone and to visitors
• Conducted counselling
• Given special / remedial education
• Given medicines at a reduced rate
• Had Support Group Meetings on the 2^nd and 4^th Saturdays of each month.
• Conducted Awareness Programs
• Conducted rural epilepsy camps

 

DETAILS OF OUR MAIN PROGRAMS

 

RURAL EPILEPSY CAMPS, PEN

Five rural epilepsy camps were held at Pen, Raigad district on the following dates:

• 22^nd December 2013 – Lupin Laboratories brought EEG machines & technicians to this clinic.
• 6^th October 2013
• 14^th July 2013
• 21^st April 2013
• 27^th January 2013

 

An average of 90 patients attended each camp where medicines are given free or at a very nominal rate.

 

E-CON 2013 – HYDERABAD – 9^th & 10^th of February

12 Samman members / caregivers attended this conference.   They performed a skit at the Patients’ session.  Dr. Pravina Shah gave the Presidential oration and Carol D’Souza was invited to give the Bajoria Oration.  3 days, prior to the conference, we organized sight seeing tours which covered Salarjung Museum, Nizam museum, Birla Temple, Chowmohalla Palace, Golconda fort, Zoo Park, Lumbini Park and Ramojee Film City.

 

Support Group Meetings

12^th April 2013 – Expression of self through song poetry and dance.

27^th April, 2013 – Dr. Pravina Shah reviews members blood test reports and gives prescriptions.

11^th May, 2013 – Celebration at Mukesh Shah’s home

25^th May, 2013 – Carol D’Souza spoke about the A of Good Health.  The bodily needs of Acid-Alkaline balance, Anti-oxidants, Amino Acids, ‘A’ foods that are good for your health and ‘A’ foods that are not good for your health were explained. At the end of the session we also had games to test their knowledge.

8^th June, 2013 Keyur and his family welcomed us to his residence at Lalbaug.  Kunal his twin brother a yoga teacher gave us a demonstration.

22^nd June, 2013 – Carol conducted the B’s of Good Health such as the importance of Blood sugar, Blood pressure, Blood clots, bacteria and some B foods good for your health i.e. Bananas, beetroot & bran

10^th Aug 2013 Dr. Shah attended meeting in Shetty’s restaurant. Discussed plans for Samman.

24^th Aug, 2013 Carol D’Souza did the C’s of good health

14^th Sept 2013 Carol D’Souza did the  DE & F of good health

28^th Sept 2013 World Human Development Center Lecture organized by Keyur Vaghela

14^th Dec, 2013 through the efforts of Dr. Bina Sawant, Teachers from Dr. & Master Zhi Gang Sha’s came to ECell to lay their Divine Healing Hands for soul healing for our members.

30^th Dec 2013 – Christmas cum New Year Party at Sudama, Krishna Palace sponsored through donations received from Sarah Sharma

11^th Jan, 2014 – Support Group meeting held at Kokilaben Dhirubhai Ambani Hospital, Andheri

8^th Feb, 2014 – Carol D’Souza spoke on ‘Understanding your blood report’.

22^nd Feb, 2014 – Dr. Bina Sawant and Kavita Shanbhag informed our members on how they could obtain a Disability Certificate.

8^th Mar, 2014 – Being women’s day we shared about the women in our lives who have inspired us.

22^nd Mar, 2014 – We first met at ECell where Sarah had sent gifts for all ECell members.  After that we went to Sarah’s place on Napean Sea Road to celebrate her birthdahy..

 

Diagnostic Health Camp – 9^th April, 2013

• At ECell in coordination with Thyrocare we had blood testing for complete health evaluation for our members and their caregivers. The cost of the test which included Vitamin D3 and B12 along with 48 other parameters was Rs.1400/-.  People with epilepsy who were members were subsidized by 50%.

 

Teacher Training Course Muskan Foundation 5-7^th June, 2013

Muskan Foundation that works for people with disabilities organized a 3 day refresher course (5-7th June 2013) to update their teachers on changing trends, understanding of associated disorders, technology and education of children with disabilities.

Professionals from various fields were asked to conduct lectures / workshops. Samman member and Epilepsy Educator Kavita Shanbhag spoke to the teachers about Epilepsy and understanding children with convulsions and its implications to teachers and parents.

 

Exhibition cum Sale at St. Joseph’s Convent – 25^th August, 2013

Once again we took part in the sale for NGOs organized by the ex-students of St. Joseph’s Convent at their Alma Mater.  This year too we enjoyed the event, created awareness and made a good sale.

Awareness Program at UCB Corporate Office – 16^th November, 2013 : Shenaz and I were invited to UCB India to talk to their employees about epilepsy. I spoke on ‘Understanding the challenges faced by people with epilepsy and caregivers’ and Shenaz spoke about her life with epilepsy. The audience was attentive and had a lot of questions. They appreciated that Shenaz was courageous enough to share with them about her personal life.

Patient Awareness Program at Kokilaben Dhirubhai Ambani Hospital on NED 17^th November, 2013.  The program titled ‘Success Despite Seizures’ was organized by a team from KDAH headed by Dr. Jayanti Mani.  IEA / Samman Association was given the opportunity to talk about the work we do. We were also given a table where we gave out our brochures and spoke to other people with epilepsy.

Epilepsy Education Program for General Physicians at Fortis Hospital, Mulund on NED 17^th November, 2013 – This was organized by Dr. Pravina Shah.

Conquering Epilepsy Book Launch & AGM 21^st November, 2013 – First let me thank Dr. Pravina Shah for taking a lot of effort to see that this book got done in the best possible way. And I also thank the Distributors Bhalani Medical Book House and Ashish Arts who were very pleasant and cooperative to work with.  As you’ll aware the book launch and AGM took place at Krishna Palace and was well attended.  As mentioned earlier both IEA and Samman have benefitted financially from this deal.

 

Press Club Meeting – 22^nd November, 2013

We also took the opportunity of the book launch to have a press conference.  Dr. Pravina Shah spoke on the medical aspects, Sujatha Gopalan spoke about difficulties faced by children and Carol spoke about the book Conquering Epilepsy.

 

Indus Festival of Charities Exhibition cum Sale 7^th December, 2013

Every year on the  1^st Saturday in December the Indus Festival of Charities organizes an exhibition cum sale for NGOs.  This year too we participated and enjoyed the event.

 

Christmas Party – 30^th December 2013

We celebrated with a lunch at the Sudama restaurant at Krishna Palace Hotel.  The lunch was organized with the support received through the late Sarah Sharma.

 

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Carol D’Souza continues to maintain this blog for Samman Association.