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Annual General Meeting 2022-2023 Comprehensive Report

By Delhi, General No Comments

Annual General Meeting 2022-2023 Highlights: Empowering Together

We are thrilled to share the highlights of the Annual General Meeting for the year 2022-2023, which took place on Sunday, August 20, 2023, at the prestigious Hotel Muse Sarovar Portico. This gathering served as a testament to our shared commitment to the Multiple Sclerosis cause.

The event commenced with a warm welcome by Ms. Bipasha Gupta, who eloquently introduced the distinguished Chapter members and the esteemed Head Office representatives. Following this, Mr. Sandeep Chitnis, Hon. National Secretary, and Mr. Ramesh Rao, Hon. National Treasurer presented a comprehensive overview of the financial landscape, shedding light on the balance sheet and income & expenditure statement for the past year. The meticulous examination of accounts culminated in their unanimous approval, signifying a collective dedication to transparent financial management.

Lunch provided a well-deserved break, fostering camaraderie among attendees. The post-lunch session showcased the incredible strides made by our Chapters through cross-learning activities. The Mumbai Chapter exemplified the spirit of collaboration through Grocery Distribution and the impactful joint Medical Seminar with Kokilaben Dhirubhai Ambani Hospital (KDAH) on “Conquering MS Disabilities”.

The Hyderabad Chapter highlighted the potency of Seminars in raising awareness about MS, while the Chennai Chapter unveiled the moving documentary “Battlers with a Broken Wing,” capturing the resilience and unity of MS individuals during their annual retreat.

Among the wealth of shared insights, one initiative truly stood out: the Brain Lab program led by the Chennai Chapter. This noteworthy endeavour involves hosting weekly online group psychological sessions every Thursday, lasting for an hour. These sessions, accommodating approximately 30 participants, are facilitated by a distinguished psychotherapist with expertise in the field. A distinguishing feature of the Brain Lab initiative is the additional half-hour segment dedicated to fostering social connections among participants after the main session concludes. This dual-pronged approach not only provides valuable psychological support but also cultivates a sense of community and interpersonal engagement. The Indore Chapter’s innovative fundraising video that raised Rs. 2.5 lakhs on YouTube, featuring 15 talented singers performing old Hindi songs, exemplified their commitment to our cause.

The Thiruvananthapuram Chapter’s remarkable achievement of registering 150 new members was celebrated, alongside the Pune Chapter’s commendable effort to provide 50 free MRI scans monthly. Additionally, Pune Chapter took the initiative to enroll 63 MSPs for UDID cards, and on World MS Day, they illuminated the Shaniwar Wada monument from 7 pm until midnight, symbolizing their commitment to raising awareness about multiple sclerosis. The Bengaluru Chapter’s large-scale awareness event on India MS Day, where more than 450 people were sensitized, received acclaim. Similarly, the chapter’s historic achievement of uniting 31 Rotary Clubs and 3 Rotaract Clubs, not only in India but globally, to celebrate World MS Day and raise MS awareness, inspiring numerous Rotary Clubs to engage in joint projects with MSSI through RAGAMS, was appreciated by all. Another noteworthy accomplishment was challenging stereotypes through a fashion show featuring 14 models who are Persons with MS confidently taking the ramp. On the other hand, the Kolkata Chapter’s thoughtful birthday celebrations for MSPs showcased the depth of our community engagement.

The Delhi Chapter’s commendable virtual outreach efforts included the establishment of 15 WhatsApp support groups, facilitating direct engagement with a community of 800 MSPs, which was met with high regard. Moreover, their specialized sessions focusing on Yoga and meditation garnered well-deserved acclaim. Another heartening practice that earned significant appreciation was their consistent and unwavering commitment to extending birthday wishes through video calls to over 800 MSPs. The day’s proceedings paused for tea, offering a moment of respite.

The AGM reconvened with Ms. Mamta Gupta, Vice President, enlightening the audience about the collaborative resource development undertaken with MSIF as part of the International Resource Group from India. Her passionate plea for Chapters to print and utilize these resources resonated deeply.

Mr. Javed Hasan, the Project Director then provided insights into the impactful meetings held with Disability Commissioners across several states, underscoring the significance of these engagements. A comprehensive report on the Youth Wing Group’s endeavors was delivered by Mr. Sanket Mestry, Hon. Joint Treasurer outlining various projects.

Ms. Anjali Vyas shared a succinct update as the representative for World Multiple Sclerosis Day, offering a global perspective on our mission. The AGM concluded on a note of gratitude as Mr. Sandeep Chitnis extended heartfelt thanks to all attendees for their unwavering dedication.

The event transitioned seamlessly into an evening of music, entertainment, and networking, culminating in a delightful dinner. Our shared commitment and enthusiasm have once again invigorated our resolve to navigate the challenges of Multiple Sclerosis together, hand in hand. Here’s to another year of progress and unity!

Debunking Disability with MS Connections

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We hosted a session on Debunking Disability with MS Connections! This time our connections included persons with other disabilities.

The speakers of the session were :

  1. Alice Abraham: Disability Advocate and researcher, a person with Visual Impairment
  2. Amit Kumar Yadav: NCPEDP – Javed Abidi Fellow, a person with a locomotor disability
  3. Chaitanya Mukund- Disability Advocate, a person with Cerebral Palsy
  4. Ferdinand Lyngdoh Marshillong- Research Scholar, a person with deafness

COVID 19 – Finding Opportunity In Adversity

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COVID pandemic has changed our lives, the way we think and the way we work. A lot of things will not be the same for a long time to come. At MSSI we can confidently say that in spite of this unprecedented global health adversity that impacted people world over we were able to find opportunities which helped us to stay connected with a lot of members meaningfully by leveraging technology and digital medium.

With the onset of COVID and mobility restriction followed by complete lockdown all our plans to do in-person activities not only had to be suspended but we had to recalibrate those activities in order to be compliant with various central and state advisory of India COVID-19 guidelines and protocols.

We have been working very hard to stay in touch with our members as well as reaching out to the larger MS community in India both at the National and regional levels. Our chapters are constantly making efforts

  • To ensure ration and medical supplies reach the needy
  • Conducting Teleconsultations for MS persons
  • Online Physiotherapy sessions
  • Counselling
  • Recreational programs
  • 1 on 1 Q&A sessions with Neurologists and specialists

At the National level, we are conducting Webinars addressing concerns of Persons with MS cutting across geographical boundaries. Some of the most popular webinars and videos included:

  • Interactive session with Neurologists and specialists
  • Interactive sessions with government agencies and officials
  • Meditation of Self Care
  • Pranayam – Yogic Breathing for Multiple Sclerosis
  • Joy of Mandalas
  • Musical evening
  • MS and Low Self Esteem (in multiple languages English, Hindi, Punjab, Bengali, Kannada)

We have also been able to work closely with our Medical and Scientific Advisory Committee members comprising leading neurologist working in the area of MS particularly. In spite of their extremely busy schedule and handling COVID related health crisis, they have been able to put together a recommendation for Assessing  MS while issuing disability certificates

On 30th August 2020, MSSI  launched its first Advocacy Campaign called Reassess MS. The campaign focus was on the gaps in the current assessment guideline under Rights of a person with Disability Act, 2016. It was designed to reach our stakeholders and included  Ministries, Government Departments, Disability sector organisations, Health professionals, MS persons and general community

We have been conducting a series of Capacity building workshops in the areas of Leveraging  Social media platform, Understanding international and National Disability Laws and Rights by domain experts.

We were able to sensitize government officials engage with Disability Commissioner of most of the states we work in.

Since then we have been consistently engaging and have sent representation to Ministry of Health & Family Welfare Ministry of Social Justice and Empowerment to review the current assessment guidelines, we have sent our inputs for the union budget to Ministry of Finance.

Steps to colour a Mandala

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MS Person Anjali Vyaas from Pune shares her mandala art experience.

Steps to colour a Mandala (BY SMUDGING) on your smartphone:

  1. Get the raw file of Madala in an editable format, jpg. While you have saved it in your phone’s gallery, you can use options to directly edit the picture on your phone.
  2. Choose your Mandala in the
  3. Find the ‘Edit picture’
  4. Select a suitable option to edit a You can find many options like effects, text, frame etc. Don’t use them. Find a suitable option to EDIT the picture. In many phones like mine have an option of Graffiti.
  5. Let’s say you choose After pressing this option, you will see further options of it: Brush, eraser, a colour palette etc.
  6. Click the ‘brush’ icon and choose the suitable size to (The brush lets you smudge).
  7. Pick any colour to smudge a portion of your
  8. You can undo the edit if it goes
  9. Just be careful while saving the If you feel tired with all the smudging and have half completed the Mandala, save that half part and then later edit the saved part that you coloured. And tadaaaa… You are done!
  10. Also, there are of applications to paint a jpg file. You can find them on playstore. That might ease your effort of colouring.

Mandala art therapy is truly healing.

It is tiring to colour on the phone if the screen is not big enough! It needs patience and while I was doing it, it was really helping me being patient. The fact that a Mandala is made and coloured inside to outside, the process of doing so in itself a meditation!

The effort is worth it.

You all will love it. Try it, please! Share your work

Mindfulness in Multiple Sclerosis.

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MSSI Trivandrum Support Group along with Sree Chitra Thirunal Hospital conducted a program on “ Mindfulness”.  Dr. S Krishnan (Associate Professor of Psychiatry) and Ms. Lekshmy K (Psychologist & Mindfulness Researcher) lead the session.

Mindfulness training has been shown to positively affect brain structure. Many MSP’s participated in this session, which covers training sessions over 2  months.


By Delhi, General 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

By Delhi, General No Comments

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.