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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!

Disability Week Bengaluru Chapter

By | Bengaluru | No Comments

As a part of Disability Week Bengaluru Chapter showcased the #My Invisible MS campaign photographs at ANZ, Bengaluru. More than 500 people visited the kiosk and Shankar Subramanian gave a talk on disability etiquettes and invisible disabilities.

 

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.

REPORT ON WORLD DISABILITY DAY

By | Chennai | No Comments

International Day of Persons with Disability was observed on the 3rd of December 2019. The theme for this year was “The Future is accessible.”

Marina beach is one of the longest beaches in Chennai city. The Greater Chennai Corporation in observing the International Day of Person with Disabilities based on the theme “The Future is accessible”. They organized an ‘accessible walkway’ in Marina Beach for the disabled people to Experience the roaring waves of the Bay of Bengal.

The event was inaugurated by the Greater Chennai Corporation Commissioner, Mr.G.Prakash and State Disability Commissioner Mr. Johny Tom Varghese. ‘3 Specialized Wheel Chairs’ were provided by Greater Chennai Corporation to take a ride along the sands and reach the seashore safely and conveniently.

Disabled people came from different organizations and MSSI to experience the seawater. Chennai Chapter team took part in this initiative and a few of the MS Persons accessed the walkway through the beach wheelchair and enjoyed a few moments in the seawater. A dip in the seawater was the joy for many differently-abled persons.

OzHaat – An NGO Mela

By | Delhi | No Comments

On Saturday 30 November, MSSI Delhi participated in the inter 19th edition of OzHaat – an NGO Mela organized by the Australian High Commission.

MSSI Delhi has been associated with this event since its inception, and we use this wonderful opportunity to provide a platform to our MS members and their families to showcase their talents and entrepreneurship by displaying and selling various things made or sourced by them.

Over the years MSSI members have sold a variety of goods ranging from hand-knitted sweaters, embroidery items, pickles, and artisanal chocolates to hand-painted cards, bags, shoes, and shawls.

The entire proceeds from the sales go to the individuals participating with MSSI Delhi under its “ Swayam” project which acts as a facilitator, helping them to get an opportunity to not only earn but also give the participants a feeling of pride that enhances their self worth in the eyes of their friends and family.

It is our effort to give between 4-5 PwMs this chance every year.

PHYSIOTHERAPY at UCCHVAS

By | Hyderabad | No Comments

MSSI HYDERABAD has arranged a meeting with Dr.Vijay, an experienced Physiotherapist at UCCHVAS NEURO REHAB AND TRANSITIONAL CARE CENTRE to understand the importance of Physiotherapy.

This month MSPs and Caregivers joined together to learn the benefits of Physiotherapy, a treatment to restore, maintain and make the most of a patients mobility, function and well being.

MSPs have learned how Physiotherapy helps to manage MS.

This centre provides various exercise programs and inpatient facilities to make patients functionally active, handle depression and come out of trauma.

Face to Face Programme

By | Chennai | No Comments

MSSI  Chennai Chapter monthly “Face to Face” Programme held on 23-11-2019 started with the Meditation session by Dr. R.J Kalpana on the topic “Learn to meditate, Heartfulness Meditation with Yogic Transmission”. It was a 40-minute online session. Our MS Persons and their caretakers enjoyed and felt relaxed at the end of the meditation session which in turn helped them to stay active for the next session.

The guest speaker for the programme was Dr. Ravi Samuel, one of the Chennai’s eminent psychotherapists, who has over 20 years’ experience in treating people with emotional, behavioural, psychological, psychiatric problems, corporate mental health, etc. He has had professional training in Cognitive Behavior Therapy by Mr. Allan Davidson, Cognitive Behavior Therapist at Dept. of Clinical Neurology, Institute of Neurology and National Hospital for Neurology and Neurosurgery, London. He addressed our MS persons and their caregivers on the topic “ Caring for the Carers”.

He focused on mental well-being, for MS persons and Caregivers and how to handle the emotional effects, organize and fight within ourselves. He explained the healing process which was very informative and useful for our caregivers as they were able to relate it and make it has an interactive session.

As a coping mechanism, the counsellors Ms. Gayathri and Ms. Kavya who teamed up with Dr. Ravi Samuel taught us few breathing techniques. There was a question and answer session where our MS persons and caregivers clarified their doubts.

A birthday cake was cut by those who celebrated their birthday this month. They are  – Mrs. Ann Gonsalvez, Mr. Sivakumar, Mr. Raghunathan, Mrs. Lucy Nathan and Ms.   Keerthana by singing of happy birthday song by everyone.

Delicious snacks and tea brought the meeting to a close.

Picnic to Empress Garden

By | Pune | No Comments

A picnic was organised at Empress Garden on Sunday 17th November 2019. Around 74 people consisting of MSPs, their caregivers, dependent children of MSPs, Committee members, Staff members, invitees and BNY Mellon volunteers attended the picnic.

MSPs who were not in a position to travel to the picnic spot on their own were picked up and dropped back home by BNY volunteers.

Volunteers from BNY Mellon arrived at the picnic spot right on time, 9.30 am and helped MS Persons reached Nana Nani Park. The volunteer was available throughout the picnic duration and helped our MS Persons in many ways.

Our founder chairperson Mrs Mini Grant’s friend Mr Suresh Pingale, a member of Garden Committee in Pune allotted us Nana Nani Park and sponsored delicious breakfast for participants.

Breakfast was served at about 10.30 am. Volunteers helped in serving the breakfast. This was followed by a diverse range of activities which included singing performances by MSPs and interested picnickers, Antakshari, Housie game and other unique games. Prizes were also given to the winners.

17th November, being a birth anniversary of Late Dady C. Dady who is one of our major donors, a Cake cutting ceremony was organised. Mrs Mini Grant kindly accepted the request of all the members to perform the cake cutting ceremony.

Lunch was served at 1.30 pm. Participants, especially MSPs while having lunch interacted with each other. They shared their views, concerns with one another and were very happy to be in the group once again. They all really enjoyed this outing which gave them an opportunity to go away from home, meet old acquaintances, and get engaged in non-routine activities.MSPs and their caregivers thoroughly enjoyed this fun-filled picnic. The picnic concluded at 4.00 pm.

BNY Mellon Mega CSR Day

By | Chennai | No Comments

November 4, 2019: is marked as Mega CSR Day for BNY Mellon, our CSR partner in Chennai.  BNY Mellon organised a walk for creating awareness on “Multiple Sclerosis” inside DLF IT park campus which houses more than 21 IT companies.   More than 350 of BNY Mellon employees took time off from their daily routine and volunteered to walk along with our MS persons and their caregivers by holding placards and banners of MSSI, which spoke volumes for Multiple Sclerosis.

We were able to create awareness among the young employees of 21 IT companies, maybe 5000 or more who witnessed the walk.

Annual Diwali Programme 2019

By | Mumbai | No Comments

MSSI Mumbai Chapter organised Diwali Program on Saturday, 2nd November 2019, from 4.00 pm to 7 p.m. at Shanmukhanand Hall, Matunga, Mumbai.

Total 120 attended the program including 41 MSPs.

The program began with welcoming the audience by Mrs. Sundari Raju, Jt. Hon. Treasurer, followed by an invocation song by Mohan Music Club. The chief guest of the program was Dr. Kishor Mehta, Homeopath. He has started MS Clinic at Ghatkopar and soon going to start another one at Vile Parle.

Mr. Raj Dhyani, Committee Member of MSSI, Mumbai gave a presentation on a new project of “Artificial Intelligence for Rehabilitation” for MSPs.

We were delighted by the presence of Mr. Hemant Nerurkar, Retired MD of Tata Steel as a Guest of Honour for the program. Mr. Hemant Nerurkar generously sponsored the entire Diwali Program. Mrs. Nerurkar, Hon. Treasurer of Mumbai Chapter devoting her valuable time for MSSI.

Diwali Dhamaka started with entertaining performances by adorable children of MSPs. Their charming dances, songs were applauded by all and MSSI appreciated them with Chocolate boxes and T-Shirts.

The highlight of the program was MSP 72 year Sudha Kulkarni’s excellent dance performance with superb facial expressions and movements with the help of walker on Hindi film songs.

This was followed by the popular music program by Mohan Music Club, who enthralled the audience with their melodious voices from popular Bollywood songs. The audience enthusiastically participated in singing and dancing along with them.

MSSI is grateful to Mohan Music Club for giving free music performances. They were given a token of appreciation by MSSI.
Refreshments were served to all present and travel bags and sweet boxes were given as Diwali gifts to all MS families.
Mrs. Sundari Raju anchored the program and proposed vote of thanks to all present.