To Commemorate World MS Day MSSI Bengaluru Chapter hosted a photography exhibition – Seeing the Unseen depicting the pictures of Invisible Symptoms of MS.
The Exhibition was held from 29th to 31st May 2019 at Karnataka Chitrakala Parishath, Bengaluru which explored the voice of MS persons about their Invisible Symptoms.
Chief Guests for the event was Rotarian Suresh Hari, District Governor RMV Club, Ms. Vasanthi Hariprakash – Social media influencer & Journalist, Rotarian Rajaram & Punkaj Gupta, Hon. Secretary of MSSI, Bengaluru Chapter.
World MS Day program started with the lighting of the lamp by the chief guests Mr. Viresh Oberoi – MSSI President, Mrs. Renuka Malaker – National Hon. Secretary MSSI, Guest of Honor RJ Melodee, Mr. Mariappan, Asst. Director – Dept. of Empowerment of Differently Abled & Senior citizens, Karnataka Government. The invocation was rendered by MS person Kavita Jayaram followed by Welcome Address by Mr. Punkaj Gupta.
WMSD Representative Mr. Shankar Subramanian spoke about MSSI & WMSD. Mr. Mariappan spoke about various aspects of the Disability Act & about the implementation of UDID card in Karnataka. He also assured of his possible assistance towards MSSI from the Government end.
A panel discussion was held followed by press interaction.
Event 1: WORLD MS DAY PROGRAMME ON 19th May 2019
Multiple Sclerosis Society of India – Chennai Chapter together with Merck Serono organized an Awareness program on theme of World MS Day – “My Invisible MS Symptoms”, at Hotel Savera. The Chief Guest for the program was Dr. Deepak Arjundas from Vijaya hospital.
Event 2: WORLD MS DAY PROGRAMME AT EXPRESS AVENUE
World Multiple Sclerosis Day 2019 is on May 30, 2019, and it is the only global awareness raising campaign for Multiple Sclerosis, the world over.
This year MSSI Chennai Chapter partially sponsored by Sanofi, created an Awareness programme, in observing World MS Day on 23rd Thursday at Express Avenue Mall at 6.00 pm. The Chief Guest for the program was Ms. Dipshi Blessy from Youtube channel – PutChutney.
The awareness program was through a music performance by our MS person crew known as Q- Elements. The lead singer was an MS person, a lady of great talent. The fantastic dance performance was by Dance studio. A Stand-up comedy and our MS persons created the much need awareness of MS by holding the placards of the Theme of World MS Day “ MY INVISIBLE MS”. The MC for our program was one of our MS person himself, and he did a wonderful job.
Event 3: World MS Day – PRESS MEET REPORT
World MS Day observed on 30th May 2019. To raise awareness of “My invisible MS”, Press Meet was arranged at “Chennai Press Club- Chepauk”. The press meet was addressed by Neurologist Dr. M.R Sivakumar, who spoke in detail about the diagnosis, treatment, recent developments in medicine, etc. Mrs. Ann Gonsalvez Chairperson spoke about the activities of MSSI Chennai towards the welfare of Persons with MS and establishing life- long care and support system for them. Ms. Smitha, Committee member, told the press about the need for government to acknowledge MS as Multiple Disability due to more than 41 invisible symptoms apart from the visible ones, the various barriers faced and huge restrictions in the participation of persons with MS due to the same.
It was covered by English and Tamil News, also telecasted and published on the same day as well as the next day.
- No: of : Tv Stations – 7 such as Moon tv, Jaya tv, Thamarai Tv, MMTV, IBC, TNA and Polimer News.
- No : of : Tamil papers – 4 such as Tamilsudar, MGR News, Dinabhoomi and Mudalseithi
- No : of : English papers – 4 such as Deccan Chronicle, Indian express, Newstoday and The Hindu
- No: of : Malayalam papers – 1 that is Mathurubhoomi
Here are the link of the newspaper.
- https://youtu.be/Tr38DbJntuk – TNA NEWS Link
- https://www.facebook.com/ibctamilmedia/videos/458631764941109/?sfnsn=more –IBC TAMIL NEWS Link
- https://newstodaynet.com/index.php/2019/06/01/never-ending-problems-of-patients-with-multiple-sclerosis/ – Newstoday Link.
Event 4: Awareness Programme on “Invisible Symptoms of MS at AGS Cinemas.
The video was screened on 3 AGS CINEMAS on 30th MAY, this is the poster Created by MSSI –CHENNAI CHAPTER by using the Poster making tool from the website and collaged to raise awareness of Multiple Sclerosis and it’s Invisible Symptoms. Video attached in zip file.
World MS Day 2019 events across India was varied and informative! This year too we saw a considerable increase in awareness about MS & MSSI both at the national & regional level through press coverage in English as well as regional languages. WMSD activities started as early as the 1st week of May along with powerful photographs depicting Invisible symptoms extensively through all our Social media platform & website. We engaged with multiple stakeholders that included central and state governments, professional healthcare individual and organizations, members of Medical and Scientific Advisory Committee & Advocacy experts.
Highlights of the 3 National events were the 2 Press conferences followed by Panel Discussions held in Mumbai in Bangalore on May 29th & 30 respectively & the 1st Roundtable conference of the MSSI – Medical & Scientific Advisory Committee MSSI-MSAC. The main focus was the need to continue engagement/dialogue with all stakeholders in articulating the issues of disease burden, lack of reliable data on MS prevalence in India and reviewing the existing assessment guidelines in the RPWD Act.
Mental Health and good Quality of Life is very critical to PwMS and their families. In order to talk about that we have planned to start a Patient Education & Awareness Initiative, under this we will be starting a Free Webinar series in collaboration with doctors of our MSSI-MSAC.
TheWorldvsMS website a social media platform which talks about the importance of happiness and emotional wellbeing and Brain Health publication was released. It is currently available in English, Hindi, Bengali, Tamil, Telugu and will be up on our website in the coming days
The modern seminar hall, on the 9th floor of IN-K, Park Circus was the venue for the WMSD Event. The topic for the event was “The Unseen 2019” in line with the global theme of this year’s World MS Day – “My invisible MS”.
Mr. Anirban Banerjee, Hon. Joint Secretary of MSSI, Kolkata and Hon. Member of National GC, MSSI welcomed the audience present. Ms. Anuradha Goswami, the Hon. Secretary of MSSI, Kolkata, in her short speech was extremely precise in highlighting the challenges faced and fought by all MS friends and their caregivers.
Ms. Swapna Ghosh, Hon. Vice Chairperson, MSSI invited on stage, the Chief Guest for the evening – Dr. and Prof. Bibhukalyani Das, the Academic Director of IN-K, who was extremely kind to emphasize on the challenges of handling and managing MS and assured MSSI of all possible support and cooperation from IN-K in their fight to conquer MS. The star attraction for the evening was a popular singer and musician – Siddhartha Ray (Sidhu) enthralled the present gathering with some of his hit songs and then with the song he had written, composed and sung last year on WMSD – “Bhalo thakar Gaan” which was also recently recorded along with chorus vocals by few of MSSI, Kolkata members. The formal audio launch of this song was done by Dr. and Prof. Bibhukalyani Das, the Academic Director of IN-K, with huge applause from one and all and the song is already available on various audio platforms.
The rest of the evening was followed by a series of talks and interactive discussion by the expert staff of IN-K:-
- Visualisation of invisible MS by Dr. Ashis Datta, Consultant Neurologist, IN-K.
- Functional Rehab for MS by Mr. Rakesh Mahapatra, Occupational Therapist, IN-K.
- Invisible symptoms of MS by Dr. Anirban Ghoshal, Consultant Neurologist, IN-K
- Physiotherapy in MS by Mr. Dawa Lepcha, Physiotherapist, IN-K.
The event was attended by more than a dozen members of the local press and media and some 70 odd MS Friends and their caregivers. Leading TV channels (ABP Ananda, Jiyo Bangla, Sadhna News), radio (AIR) & local dailies (Ei Somoy, Sangbad Pratidin) covered the event.
MSSI Hyderabad Chapter observed the World MS Day on 30th May 2019 at the City Center Mall, Banjara Hills, Hyderabad from 5 p.m. to 7 p.m. The theme this year was #My Invisible MS. MS can be Managed, let’s fight it together which means “TOGETHER WE ARE, TOGETHER WE CAN AND TOGETHER WE WILL “.
We had a large number of MS persons (29) along with their family members, caregivers, doctors, supporters and donors adding to over 100 people. The evening started with a welcome address by our honourable Chairperson Mrs. Mamta Gupta, who gave a brief outline of the activities held during the year.
Some of the friends with MS shared their invisible symptoms on MS, and how they are coping up with them.
It was a delight to have Dr. Namita Singh, Neuropsychologist from Apollo Hospital Hyderabad as the Chief Guest. She gave a very interesting talk on ‘Invisible symptoms of MS’ and how they can be managed. All the PwMS were able to understand and co-relate with many symptoms which occur off and on in their life’s journey with MS, for which they had no understanding earlier.
This was followed by the much-awaited fun and frolic for the laughter evening – rendered as a wholesome fun bomb by Mr. Vivek Muralidharan, the stand-up comedian.
The surprise for the evening was the arrival of Mr. Mahender Vaishnav, Captain of Telangana Blind Cricket. He has the distinction of winning the world cup for India 2018 in Dubai. He is also a motivational speaker. He shared his challenges and how he overcame them, which left all the PWMS motivated to the hilt.
The wonderful evening finally came to an end with the vote of thanks given by our Founder member Mrs. Meena Gupta, thanking Dr. Namita Singh, Mr. Vivek Muralidharan, Mr. Mahender Vaishnav, our main sponsor Sanofi Genzyme, and other co-sponsors Subway, City Centre Mall, Hyderabad Talkies.
The chirpy Master of Ceremonies was Mrs. Arti Vishal Mital, Secretary MSSI Hyderabad Chapter. This event was covered by the local media – TV channels ETV, HMTV, 10TV, INB etc. The Times of India daily published an article on – Stress a Key Trigger behind MS
On occasion of World Ms Day MSSI, Mumbai & Apollo Hospital, Navi Mumbai
had a very interesting Medical Seminar where there was a Medical Panel consisting of eminent doctors: Dr. Rekha Bhatkhande, Gastroenterologist & Hon. Secretary of MSSI, Mumbai, Dr. Girish Nair- Neurologist, Dr. S.Kulkarni- Physician, Dr. Niraj Ravani –Psychiatrist, Dr. Tanuja Akre- Physiotherapist, Ms. Pooja Lakhani – Nutritionist, Ms. Shivani Rajashree – Counsellor
The MSIF Theme is my Invisible MS, which means Raise Awareness for visibility of MS & MS persons.
In Mumbai, a panel discussion on MS was conducted by eminent doctors of Apollo Hospital, The session started at 10.30 a.m. in the presence of office bearers of Mumbai Chapter, MSPs & their families, Caregiver, volunteers & young doctors of Apollo Hospitals. Dr. Neha conducted the programme which was started by lighting the lamp by Mrs. Sheela Chitnis & CEO & COO Doctors of Apollo Hospital. Sheelatai gave the presentation on work & history of MSSI & journey ahead.
Dr. Girish Nair introduced the panel of doctors & the session started.
Dr. Nair gave a brief introduction of everyone & announced a plan to start MS Clinic. The session continued for more than two hours & it satisfied a lot of queries from MS persons. It covered medical, social, psychological, nutritional aspect as well as the need for awareness among people. The challenges are many & people exchanged views and notes to help each other.
At the end mementoes were given by Sheelatai & vote of thanks was given by Neha.
Eisai Pharma Contributed a lot for awareness by distributing booklets on “ Patient Education” & did celebration by lighting “ Bandra-Worli” Sea Link in orange colour from 27th to 31st May.
We feel that the challenges are met together at various levels. They are to :
- Create awareness at urban as well as rural in cities & smaller
- To take help at primary health centres with Aanganwadi & general
- Register many of them to know & help to manage the disease at psychological, Social & financial
- Sensitise Government agencies on disability certificate & other
- Try & find/retain employment for MS
- Give medical help through MS Clinic (diagnostic).
- Share lot of modalities with all the
- Appeal various organizations, Companies & individuals for help & acknowledge their It is said that “ We grow when we face challenges”.
MSSI Pune had organised an awareness event at SGS Mall, Pune to mark the World MS Day, on Saturday 25th May 2019 between 5.00 pm and 7.00 pm.
At the outset, our Hon. Secretary Mrs Asha welcomed all present and thanked everyone for participating in Event. Then she invited Mrs Mini Grant, Founder Chairperson to brief the audience on MSSI and their activities.
The audience included MSPs, caregivers, volunteers, donors, committee members, staff members and Mall visitors. In all about 55 people were present at the event besides Mall visitors.
Mrs Mini Grant spoke about MSSI activities and the help MSSI provides to MS Persons: medicines, physiotherapy, counselling etc.
Anurag Monks, Professional Musicians presented beautiful old and new Bollywood songs. The audience was enthralled by their band and performance.
MS person Mr. Karan Jagwani who used to be a football player shared his views on MS. Though he gave up playing, never lost his courage and took medicines etc as per Doctors advice. The message he conveyed to MSPs was that one should not lose hope but fight MS courageously, and that’s what helped him remain fit. His talk was very motivational and was appreciated by the audience and MSPs.
MSSI Brochures were distributed to Mall visitors. Many of Mall visitors inquired about the MS. This event really helped us in creating awareness of MS.
Committee members felicitated MS Persons by handing over the gift.
Mrs. Asha Merchant proposed a vote of thanks. She thanked committee members, MSPs, caregivers and staff members for their participation. She also expressed gratitude to SGS Mall for allowing us to utilise their premises for this event. The event ended at 7.30 pm.
On 19th of May, 2019 MSSI Pune participated at the Indian Medical Association’s symposium at IMA House to create awareness about MS. About 80 Doctors were present. In spite of the busy schedule of IMA symposium, they were kind enough to allow us a slot of 15 minutes to talk on MS and MSSI’s activities.
Asha Merchant briefed the Doctors present with the help of powerpoint presentation the role of MSSI and kind of events it undertakes to create awareness on MS. The events include Walkathon, Musical program at Mall, Physiotherapy camp at medical college; Medical camps at Ruby Hall Clinic, a picnic for MSPs and their caregivers to ensure that they remain socially connected with one another, fundraising event and donors meet.
Madhuri Kothavale addressed the audience in Marathi and talked about MSSI, its affiliation with MSIF UK, No of Chapters in India and their objectives in terms of providing financial help for medication, counselling, providing physiotherapy, nursing assistance to bedridden needy MS Patients, visits by the Patient coordinator to MSPs to understand their special needs.
Anjali Vyas, being an MS Person herself interacted with Doctors present and talked about her MS and the way she bravely faced the difficulties arising out this disease and kept herself fit and happy.
MSSI distributed brochures to all the Doctors. There was a photo session with the senior doctors. The program ended with personal interaction with different doctors followed by lunch provided by IMA.