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INDIA MS PERSON OF THE YEAR 2019

By | Bengaluru, Chennai, Delhi, General, Hyderabad, Indore, Kolkata, Mumbai, Pune | No Comments

INDIA MS PERSON OF THE YEAR! 2019 Group Captain Prabal Malaker

A retired Indian Airforce Test Pilot who has flown almost every aircraft in the Air Force inventory in his time from MIGs’, Jaguars’, and Mirages’, to large transport carriers like the Avro and AN-32. He is a qualified flying instructor, who has imparted training to several young pilots.

His message to fellow MS persons is very straight forward, “If you have a problem, accept it. Work within those challenges and carry on with life. Keep your mind strong and paths will open up”, says a 63-year-old Multiple Sclerosis (MS) person, who has never learned to give up against all odds.

Life seemed to be going well until August 1998, when he was diagnosed with the progressive form of Multiple Sclerosis. He had a near-death experience when his plane, upon landing caught fire. Neurologists said that this could have possibly triggered off an autoimmune response to cause MS. In 1999, he was permanently downgraded from flying and his career came to a standstill. He had to retire from active service at the young old age of 52 years!

This was the time when he was introduced to MSSI Delhi by none other than Mrs. Sheela Chitnis, Co-founder of MSSI, by his sister Gopa who was living in Mumbai at that time. He joined the Delhi office as a volunteer to serve many other people like him. He has been in a leadership role and together with a team of some very dynamic volunteers who work shoulder to shoulder to improve the lives of people living with MS. He has been instrumental in setting up systems and procedures for smooth execution of projects, services, and initiatives that are offered to registered members of the society within Delhi NCR.

Prabal is a foody and a movie buff, however, going to movie halls and restaurants in a wheelchair was becoming a challenge since most of these places were not handicap friendly. He decided instead of getting stuck in the house and giving up all the things he enjoyed he would embark on a single point mission; To bring about change in movie halls and restaurants so that a wheelchair user could enjoy barrier-free access. Due to his single-handed and persistent effort, the Disability Commissioner has served notice to Movie Hall Operators which includes PVR, INOX, and Cinepolis A notice has also been served to 480 restaurants and the hotel of Delhi State to conform to the harmonized guidelines of barrier-free access for PwD.

Being an avid traveller, he has conducted accessibility audits for hotels and tourist sites in Jodhpur, Udaipur, Ranakpur, Sarnath, Varanasi and Sri Lanka for a Cox & Kings Accessible Holiday segment called Enable Travel.

He heads the advocacy arm of the MSSI Delhi chapter and has been engaging with the Delhi State Disability Commissioner on a regular basis to bring about change in policy and assessment guidelines for disability and advocates for the right of people with Multiple Sclerosis.

We wish him good luck and good health always!

International Day of Persons with Disabilities

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International Day of Persons with Disabilities is an international observance promoted by the United Nations since 1992. It has been observed with varying degrees of success around the planet. The observance of the Day aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. It also seeks to increase awareness of gains to be derived from the integration of persons with disabilities in every aspect of life. Each year the day focuses on a different issue. This years theme is, “The Future is Accessible”.

As a part of the national advocacy action plan we had identified the need to address the poor understanding of MS among external stakeholders, disability groups, government, media, and the general public. MSSI members, volunteers and persons with MS along with their caregivers participated in the Symbolic Walk to Freedom that started from the iconic India Gate in the capital city of New Delhi to commemorate the International Day of Persons with Disabilities. This event was organized by NCPEDP and the America India Foundation. Before the walk, MSSI’s India MS Person of the year, 2019 Gp. Capt. Malaker, along with members of other newly recognized disabilities were invited on the dias to release the blue and yellow balloon as a symbol of freedom from the bondage which is social, psychological, societal and individual. There was a gathering of nearly 5000 people and we were able to create a lot of visibility and awareness about Multiple Sclerosis. We gave away pamphlets with information about MS & MSSI. As a way to create awareness, we displayed placards with slogans that convey the need of the hour for Multiple Sclerosis which included Know Multiple Sclerosis, Change assessment guidelines, No Data on Multiple Sclerosis, No research, Reduce cost of Treatment.

Ironically even though the theme is Future is Accessible, that is not the reality on the ground for a person living with MS in India because they are still struggling with inappropriate assessment guidelines, lack of data of prevalence of MS in India, no research on drugs and treatment that might work. All of this leads to lack of access to schemes, social benefits, insurance and employment. We have a lot to do to change that.

Participating at national level events provided impetus to our work in the area of advocating for the rights of persons with MS.

International Networking Meetings Athens – Oct 2019

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Introduction: MS International Federation conducts various meetings that are attended by their Member organizations.  These meetings include World Conference, International Networking meeting which is held once a year and is hosted by one member country or the other.  In addition to this, they either have other meetings with smaller groups or allocate slots within the 2 above-mentioned meeting for various working group & committees, which again member organizations can attend in person or digitally. While some of MS societies can afford to pay for their travel and stay, others need to raise the money/funds to do so like MSSI has been doing.

There were about 90 volunteers, staff and people with and affected by MS from 34 countries across the global MSIF movement attending the MSIF International Networking meeting held in Athens Greece from September 13 to 16 2019 conference.

This time in addition to Mr Viresh Oberai (President) and myself we were able to secure sponsorship from MSIF for Mrs. Mama Gupta (Member representing India on International Resource Alliance). Though MSIF had agreed to support Anjali Vyas who was also assisting us in the translation of the MSIF animation videos Unfortunately due to a health emergency she was advised by her doctor not to fly hence could not attend.

We are very thankful to MSIF and the Greek MS Society for their wonderful arrangements and warm welcome extended to us

Highlights of the meeting were 

People with MS Forum: well-being and quality of life

Every two years people with and affected by MS gather to give direct input into the work of the movement. This year, the Forum focussed on well-being and quality of life with MS. Participants contributed to the well-being element of the Progressive MS Alliance’s research strategy and discussed programmes to reduce social isolation among people with MS and family caregivers. This was stimulated by an excellent presentation on the topic by EME, Spain.

The Forum participants also provided guidance on content, audience and format for an information resource on ageing with MS, which will be further developed by MSIF’s International Resource Group, for publication in 2020.

Mamta Gupta who started off with helping me on the International resource alliance has now seamlessly transitioned into being an integral part of this working group. What makes it an enjoyable is that we have created a great procedure of communication wherein she writes to the head of Inter Resource alliance only after we both have discussed and arrived at a decision.

  1. Joane Tiknor, Canada reached out to us for Urdu and Punjabi translations.
  2. Appreciation on Hindi and Telugu translations from Victoria on the videos of MS and low self-esteem, a resource developed by international resource group
  3. Sharing events and awareness ideas with Egypt, Mai Shawary New Chair of MSIF board, Reema and Ahmed Darwish.
  4. Taking Anthroposophy forward with Germany with Herbert
  5. Discussing alternative therapies with other countries
  6. Pedro from Canada, Dimitri from Greece she is a champion are friends on Facebook…sharing their events
  7. Have made other friends made on social media
  8. In her observation, she has also said that we need to look into the representation from India on the PwMS advisory committee.

In my 2018 report, I had mentioned that We still need to be represented in the Person with MS Advisory Group.

In my 2017 report, I had mentioned that the group discussed the Principles to Improve the Quality of Life, the importance of tackling societal attitudes and support for mental health were emphasised.

MS Organizations’ relations with the healthcare industry

I participated in these sessions as a member of the CEO Advisory Group where the discussions focused on relations between the healthcare industry and MS organisations. Of course, the industry is vital – we all want MS drugs to be developed, in European countries as well as in the US they provide much financial support for research which is very ethical and professionally done. However, since this is not the case in India that is something we need to think about when it comes to collaboration with the healthcare industry,

The CEOs reflected on the following in Athens: trust issues, power imbalance, or ‘micro-branded’ campaigns and websites with a lack of transparency about the companies behind them. I had mentioned that pharma and healthcare Industries work very differently in different countries and we need to know how MS societies have been successful in their partnerships with companies. MSIF will set up some working groups with industry to try to address such issues, with important input from the CEO discussions in Athens about what results we want to see.

Atlas of MS

This session was facilitated by Rachel King who is International Evidence Manager and she is working on publishing the 3rd edition of the MS Atlas. There were 3 group exercises followed by discussion and identifying challenges and possible solutions. When MSIF starts work on the MS atlas we will be informed on the methodology, timeframe. Since I am on the MS Atlas working group I will send updates as and when I get them and will also provide detailed information on what MSSI will need to do at the national as well as chapter level on a conference call with GC members and Chapter heads

MSIF is developing the next Atlas of MS, providing vital data about the number of people with MS and the support, care and treatment they can expect in different parts of the world. The CEO Advisory Group explored a new addition to the next Atlas: the survey of people with and affected by MS. In particular, participants debated the pros and cons of aiming for global coverage or of focusing on a selection of countries for this survey.

Some CEOs, particularly from organisations where recent, national surveys have been undertaken, were reluctant to burden people in their countries with another survey that might not result in change for them. Some felt that we would be able to get higher quality data if we focus on fewer countries. Others made the case that global coverage would yield vital indicative comparable data that could be used both at the global level by MSIF and by individual countries in their advocacy.

117 countries recruited. India being one of them

Patient-Reported Outcomes: Launch & Lancet

There was a presentation of the Patient-Reported outcomes project that MSIF and the Charcot Foundation launched at ECTRIMS, with the Italian MS Society as the lead agency and involvement from the Australian, Danish, German, UK, US and Swiss MS societies. The Lancet Neurology published an article about this initiative please click the link to read the article based on your interest: https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(19)30357-6/fulltext

Access to treatment

The Council, the Board, the Fundraising and Finance committees, extensively discussed proposals developed after the MSIF Board’s decision in April 2019 to explore if they should expand the MSIF-movement’s ambitions.  MSIF Board of Trustees has created a task force of the board (Viresh is a member of this task force) to create a global program to improve access to treatment for people with MS. The goal of this program is the people with MS should be diagnosed as soon as possible and promptly be offered DMT that is right for them, to minimise diseases activity, optimise their brain health and help them live their best lives.

The proposals, developed by staff with a Taskforce of board members were built on all the experience gained so far in the access work from different countries. They will step up the work to improve access to treatments and healthcare, underpinned by more capacity building. The proposal is planned to be put up for approval in April 2020 to the MSIF board. If approved the program will be implanted in around 6 countries globally. It is important that we implement the current project being funded by MSIF on ADVOCACY providing significant benefits to MSPs in India if we would like to be selected as one of the 6 countries for the new global program of MSIF

Under the global initiative of access to treatment, the application to the WHO’s Essential Medicines List (EML) was developed by experts from the medical fraternity, member organisations and PwMS. Medical expert inputs on epidemiological and clinical management are provided by Dr Kameshwar Prasad from the India perspective, he is in touch with Dr Gavin Giovanoni and many other neurologists. In fact, he was the one to bring out the fact that cheaper drugs have not been included in the EML and especially in India where MS treatment is exorbitant there needs to be access to affordable treatment

Pasting below the relevant section of the Executive summary

Medicines for multiple sclerosis: The Expert Committee recognized the public health need for effective and affordable treatments for multiple sclerosis (MS) but did not recommend the addition to the EML and EMLc of glatiramer acetate, fingolimod and ocrelizumab at this time. The Committee acknowledged the application’s approach to increase access to MS treatments by prioritizing selected treatment options. However, the Committee noted that some relevant therapeutic options for MS were not included in the application (azathioprine and natalizumab) or were not given full consideration (rituximab). The superiority of presented medicines over other therapeutic options in the outcomes considered (benefits, harms, affordability) did not clearly emerge. The Committee would, therefore, welcome a revised application which comprehensively reviews the relative roles of relevant available medicines for MS.

The Lancet has published an editorial on MSIF’s application to the WHO’s Essential Medicines List, which you can read here: https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(19)30390-4/full text.

MSIFs New Chairman Board

The Council also elected a new Board and a new Chair – Mai Sharawy (2nd from Right) from Egypt took over the reins from Weyman Johnson who retired after leading MSIF for the last eight years. Mai is very aware of the work we do in India and is extremely encouraging. Weyman Johnson & his wife are  yoga enthusiast and has expressed that he is very keen to know how the yoga project of Hyderabad does and especially said to keep him in the loop which is a big thing for us

Learnings and improving

With 90 delegates from across the world, Athens was an opportune moment to review where MSIF is with the movement’s global strategy. During the Council and Board meetings, we explored the successes and challenges of our collaborations, and ways of improving how we work effectively as an international movement.

One issue that was highlighted was the need for stronger measures for and descriptions of our progress and the differences we make. It was also agreed that discussions about the next strategy might focus on a few key areas rather than on all aspects of our mission.

It was stressed that all member organisations – small, large and from whatever region – should benefit from the networking and the efforts of the movement. We might, therefore, explore how organisations with similar needs can work in clusters, or how we can ‘match-make’ between two or more organisations.

In 2017 report I had mentioned that the Way forward was to request MSIF advocacy workshop for our Staff & Volunteers that was successfully achieved

In my 2018 report, I had shared that I was particularly impressed by the fact how progress has been made in building a stronger, broader movement through collaborations. For instance, in the Arab region through collaboration with MENACTRIMS. I shared that MSSI is collaborating with ICTRIMS for the first time as a national body with representation from all of our regions to work together with Medical fraternity, healthcare companies & government. I was being able to bring the India perspective about the challenges we face in our country with respect to lack of awareness leading to late diagnosis & lack of access to affordable treatment.

In my Rome conference report, I had shared a lot of learnings which included the following

  • We should learn from the success of Italian, Danish and Australian MS societies on how they have a strong Youth MS group, are decision-makers and board members of their own MS societies.
  • MSIF plans to conduct a global survey of MS person and MS organizations
  • MSIF is working towards publishing the 3rd edition of Atlas of MS in 2020
  • Most of the MS societies have a medical advisory board that helps in bringing a better understanding on what patient welfare societies can do to further improve the quality of life of people with MS. Information on treatments and updates on research is an area where India lacks information We have made a good beginning at ICTRIMS and Professor Comi is one of the world’s leading MS neurologists and a pioneer in the development of disease-modifying therapies in MS who we all met at ICTRIMS mentioned in his speech that doctors in India are showing interest to work with MSSI which is a very good thing.
  • Multiple Sclerosis Spain (EME) has repurposed the Quality of Life Principles by producing a visually engaging guide that accompanies each principle with a set of tips. We can definitely do this and engage with Spain to understand better how we can replicate this
  • I learnt that in 1995, the Society of Lebanese Friends of People with Multiple Sclerosis (ALSEP) was established in Zahle to provide support for people with MS in Lebanon. It relies on a small voluntary board to run its activities, including physiotherapy, providing information about MS, and organizing awareness-raising activities. They have done some great work in advocacy and demanding reduced cost for MS treatment and have managed to get it down by 75%. We also must work in full earnest on the advocacy project so that this activity can be showcased at a global platform in the coming years.
  • After attending the parallel session Online and teleservices I met Cynthia Zagieboylo (President CEO National MS society USA and Dr Timothy Coetzee (Chief Advocacy, Services and Research Officer for the National MS Society USA) to discuss potential collaboration

A lot of the learning and partnerships have worked out and next time we must raise funds and have energetic people on various committees representing India and continue the process of learning from other international MS Societies

Prepared By
Renuka Malaker (Hony National Secretary)

 

World MS Day Update – May 2019

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World MS Day 2019

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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

 

India MS Day 2019

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India Multiple Sclerosis Day is a pan India event observed on the first Sunday of February every year. This event is aimed at generating awareness about MS in the society and this is attained by involving MS patients, Caregivers and other Stakeholders from all walks of life. Further, the idea is to gather media awareness as a means to reach out to the masses. When it comes to MS, early detection is imperative to slow down the disease. Thus creating awareness about the signs and symptoms of this disease goes a long way in assuring treatment and effectiveness of precautionary measures, which will contribute to better health conditions of those diagnosed

Initiated in 2016, the purpose of observing ‘India MS Day’, in addition to World MS Day, was to celebrate the occasion at a time of the year that was favourable to Indian MS persons. Given that the essence of observing such occasions is to reach out to hundreds and thousands of people around the country and spread awareness about the challenges of living with MS in an Indian context. Thus, events and campaigns that focus on this issue are observed across all eight chapters in the country.

There is an interesting connection between Bikers and Persons with MS (PwMS)

When one rides a motorcycle everything has to be in tune with each other, acceleration, suspension, alignment, balance and brake then only you can have a smooth ride…

For a second just imagine this…

You are on a bike going on a scenic road going to your favourite destination and suddenly the engine stops working…

What do you think will happen… A Breakdown

This is the exactly what happens to a Person when diagnosed with MS because the Central Nervous system (machine of your body) stops working causing a the Breakdown….

But what is the one thing that Riders and Person with MS have in common situation? They fix the problem, make the best of what they have and carry on with life.

“Alone we can do so little, together we can do so much” Helen Keller

Here are a few videos on the events which took place on IMSD across the country

ICTRIMS – An Update

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We are back from ICTRIMS and as promised here’s the update!

In consultation with chapters heads and the governing council members who believed that showcasing MSSI as one of the largest and the only patient welfare organisation having a national presence is critical. We all agreed that now there is a greater need to increase awareness within various ministries (Centre and state) as well as within the medical fraternity especially the neurologist.  We identified 3 key areas to work on i) build the National Registry ii) set up the Medical Scientific Advisory Committee & iii) participate in India’s largest neurology conference – ICTRIMS.

While work on 2 of the 3 key areas is underway, we have just attended a very successful ICTRIMS conference. Attending the ICTRIMS with representation from all chapters created the much-desired impact on the services we provide to our registered members. It was heartening to hear almost every doctor mention MSSI and their desire to work with us to help MS persons understand and manage MS better

Our heartfelt thanks to Sanofi Genzyme, Dr Kameshwar Prasad, Dr Suresh Kumar without whose support this would not have been possible. A BIG thank you to 8 chapter heads in making MSSI participation at ICTRIMS a reality!

National Workshop 2018

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The National office welcomed its Regional Chapter heads and their representative to Delhi for a 2-day workshop in June 2018. This was the first of its kind workshop where the senior leadership team members came together to brain storm on identifying how to feed into the national initiative of Advocacy and Creating more Awareness amongst different stakeholders like policy influencer & makers.

The 2 days saw interesting and interactive sessions, games, group discussions & working out possible solutions that would help in voicing the need of person with MS in a more focused and sustained manner. Learning about most successful projects from each of our chapters through a Photo Gallery Walk Through was were enriching and inspirational

Our heartfelt thanks to MS International Federation for conducting this!

… and the MSSI was born    

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“How could you drop our baby on the floor like this? Why could you not be more careful, is it that you are jealous of him?” Such events started occurring more frequently. Everyday my anger was increasing as I was getting more and more puzzled with the behaviour of my husband.

Let me tell you about my harrowing experiences and the mental tensions that I went through during the first 20 years of my married life.  I was fighting all odds with the moral support of only my parents, brother and a few friends. The fight is not only against the disease but mainly with the society which fails to acknowledge the illness and its effects on patients and their families.

In 1963 I got married at the age of 20 and Mukund was 29, we left our hometown Bombay and went to live in Calcutta where my husband was working in a government office as a Textile Chemist.  Initially I did not notice anything amiss but soon things started going wrong.  He just could not help around the house, without being clumsy and I thought he was doing it purposely to shirk domestic responsibilities. Unknown to me he was having problems in his office too and also started picking quarrels with me without any reason. I was so unhappy and there was no one in that strange city in whom I could confide. Then came his first serious illness in 1967.  He was hospitalized for a long time without proper diagnosis, recovering only after about 4 months of sickness However, problems in office continued due to inability to handle his job.

Ultimately in 1969 we returned to Bombay and he changed his job.  I was much relieved to be back in familiar surroundings but very soon the same behaviour problems returned.  I never understood why he was under such continuous tension, causing so much irritation.  I was pained and hurt and our marriage seemed to be on the rocks.  Even though he was well qualified he could not prove his skills at work and as a result his earning capacity never increased. In January 1977, he had a second major illness and various types of treatments were tried again.  During this attack he had lost the ability to walk and was totally bedridden till May 1977.

At last in May on the advice of his office doctor we consulted Dr. N.H. Wadia.  He diagnosed the disease as Multiple Sclerosis, which made no sense to us, at that time, as we had never heard of it.  Dr. Wadia told us that it was a rare disease in India, but it was quite common in western countries.  I thought he might have got it when he was studying in Europe. I was shattered by the circumstances and with one of my Doctor friends’ advice I joined British Council Library and started reading books about MS, in earnest.  This helped me tremendously to understand the disease and recognize the turmoil my husband was going through, as I started understanding him better.

By that time his mobility was further affected.  It was very difficult for him to commute daily to his factory – 1 ½ hour journey by local train.  In crowds he suffered frequent falls, to add, his disability was not visible.  If people see a blind person or other visible disabilities they are considerate and careful but for my husband who till then looked the picture of health, nobody in that jostling crowd realized his need for help. When I approached his Superiors at work, for his transfer to a branch near our home, they flatly refused. They, like the jostling train crowds, did not realize that he was handicapped, a person who required special consideration.  If he could not travel to the factory then he should resign, we were told. How could we possibly live without a job when our son was still at school and I was then just a housewife and we needed the income for our existence?   With sheer will power my husband continued his daily travel to the factory, but I was worried at home till his safe return.
Again it was Dr. Wadia, who suggested I meet Mrs. Rehmut Fazelbhoy, a well-known Social Worker, who could help us.  Mr. Tobaccowala, Chairman of Voltas, who was keen to start Services for Multiple Sclerosis in India, had called a meeting with Neurologists and a renowned Social Worker Rehmut, where Dr. Wadia had met her.

It was the turning point in my life, when I met Rehmut Fazelbhoy in 1984.  First time I had met a stranger to whom I could pour out my pent up feelings, problems and fears. This was the day our Organization started functioning with my husband as the first MS Patient. With so much experience as a renowned Social worker in the field of Blind welfare, Mrs. Fazelbhoy convinced my husband’s employers easily about the need for his transfer to a nearby branch and within a week the orders were passed. This was the first instance of experiencing the strength of the Institution behind the needy people.

Now my husband and I were both motivated to take an active interest to help with forming a Society which could give assistance to other MS persons. I offered my services as a Jt. Hon. Secretary with Mrs. Fazelbhoy as Hon Secretary and together we worked on the Constitution in accordance with Government requirements. Late Mr Keki Randeria, father of Cawsi, a second MSPerson to join the MS Movement, helped us a lot in this task.

It was a happy day, when on July 26 1985 – the MSSI, with 3 MS Persons, was formally registered in Mumbai with the State Government as a Charitable Society.  Ever since, we have grown multifold, into a strong Oak Tree with sturdy branches, giving respite in our shade, spreading branches all over, India – Benagluru Chennai,Delhi, Hyderabad, Kolkata, Mumbai Pune. We are a dedicated work-force, striving to do our best to improve the quality of life for persons suffering with Multiple Sclerosis. Then gradually over the years, we have introduced many useful Projects which are undertaken at every branch.

Since this crippler disease starts in young adulthood and is not a killer, the patient lives a normal span of life but most of them slowly become more and more disabled and ultimately may become bedridden. So the whole family of the MS patient gets affected financially, physically and emotionally for many years.
Hence, try to lighten some of their burden by providing various Services such as Counselling, Home Physiotherapy, Home Nursing, Home help for Caregivers, Medical Reimbursements, Aids and Equipments etc. We also help the Patients to get Disability Certificates, which enable them to avail of several benefits offered by the Govt. to the disabled. In addition, we also organize – Free Medical Camps, Seminars and Workshops, Recreational Programmes for Patients and their Families. Now our  Visionary Project on the anvil is to start a Rehabilitation cum Respite Centre, bringing about transitory relief to both the patient and the stressed caregiver. This is the need of the time.

In India for other Disabilities, there are many Institutions who have got sufficient resources because people know of them, but the general public are mostly unaware of Multiple Sclerosis and its effects. So continuous awareness is most necessary.

When we read about the facilities offered to MS and other ‘challenged persons’ in Western countries, I wish we could provide ours with the same and of course we will try our best, because we must never give up hope. Still many Public Buildings do not have Elevators Hand Railings or Ramps. Public Toilets for Disabled are nearly non – existent, as also in the field of Public Transport there are no special facilities for disabled. Hence, mobility is severely affected and they become unnecessarily and unnaturally home bound, and ultimately social outcastes. Therefore, I strongly feel we must take on campaigns to create Public Awareness about the difficulties faced by MS and all such Disabled Persons.

I wish to personally Thank, each and every person associated with the MSSI – at any point in time, for lending a hand in making my – Dream come True!

-Ms. Sheela Chitnis