There's something happening always.

Monthly Meeting – Oct 2019

By | Hyderabad | No Comments

Fun and entertainment is the way to come out of daily life stress and routine to try something new and refresh your mind.

It acts as a remedy to enlighten your mood.

What a fantabulous morning at Saptaparini, the morning was filled with joy and fun.
Every attendee had a joyous time and had spent a wonderful time with each other enjoying every moment.
MSPs and caregivers enjoyed tombola, dumbshrads and song played on guitar by one of our MSP member Mrs. Hema Gulati.
Participants and winners were awarded lots of surprise gifts.

I always thank MS Society Hyderabad Chapter for arranging such wonderful and entertaining events.

Diwali Celebration and Caregivers Month

By | Chennai | No Comments

MSSI – Chennai Chapter monthly meeting “Face to Face” Programme was a Diwali Celebration on 19.10.2019. Games like identifying the personalities, dumb charades and let’s talk in Tamil, was organised by our CSR partner – BNY Mellon volunteers. The game of housie was also part the game for the evening and for every game prizes were given to the winners.

The month of October is also dedicated to our caregivers. In order to give tribute to caregivers, a video was screened on their beautiful moments with our MS Person. To honour the Caregivers for their timeless efforts in taking care of their loved ones, we gifted the spouses, the siblings, the parent, the children, the friend of the MS person.

• Mr. Anzar – Best Care Giver Spouse – Msp. Vajiya banu
• Mrs. Shaheem – Best Care Giver Spouse – Msp. Mohammed Wassim.
• Mrs.Parvathi – Best Care Giver Mother –Msp. Monalisa
• Mr. Sadhasivam and Mrs. Santhakumari – Best Care Giver Parents –Msp. Smitha
• Mrs. Subashini – Best Care Giver Sister and Friend –Msp. Uma Mageshwari
• Ms. Roshini – Best Care Giver Daughter –Msp Farzana
• Mr. Utharanaryanan – Best Care Giver Son –Msp.Saraswathy

A birthday cake was cut by those who celebrated their birthday this month. They are Ms. Kalaivani and Mrs. Parveen, by singing of happy birthday song by everyone.

The meeting ended with a high tea.

The evening came to a happy ending with MS person and Caregivers, by distributing Diwali gifts and sweets to each family and wishing them Happy Diwali.

International Networking Meetings Athens – Oct 2019

By | Delhi, General | No Comments

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)

 

Pune Marathon

By | Pune | No Comments

Ms. Gayatri Joshi, Mrs. Jyoti Ronghe and Mr. Laxman Iyer (Committee Member, Pune Chapter) attended 24 hrs relay Marathon at Magarpatta City on 5th October 2019, organized by Running Punters.

The Marathon started at 7.00 hrs. And concluded on 6th October 2019 at 7.00 hrs. Ms.Gayatri Joshi participated in the Marathon with MSSI bib and completed run of 700 metres. Ms.Gayatri was live on Facebook Page of Running Punters where she mentioned that she is running for spreading awareness and fund raising. Ms. Gayatri was felicitated by Running Punters team with a special mention at the felicitation ceremony on 6th October 2019.

Mrs. Ronghe shared information about MS and MSSI with participants and viewers. She also distributed brochures and souvenirs among them. Mr. Laxman Iyer also shared word with viewers about MSSI and MS. Both of them did appeal for donations to participants and viewers.

Running Punters have shared MSSI link for donation which is mentioned on MSSI website. They have taken up this as a long term project to support the cause.

BASIC LIFE SUPPORT AND FIRST AID

By | Hyderabad | No Comments

As we all know that first aid is the first and immediate help given to any person suffering from either a minor or serious illness or injury with care provided to preserve life.

A very interesting and lively session on first aid was conducted by Dr. Rebecca who is an MS fighter and Emergency Physician.

According to her lack of first aid and basic life, support knowledge is what she seeks to correct, knowing that the spate of deaths could have been prevented.

CPR was demonstrated on a dummy to show how life can be saved before help arrives.

MSPs and caregivers were made to do it experimentally as everyone should be aware of such emergencies and the help they can provide to the sufferer.

It was indeed an informative session.

 

To know more please click the link below:

https://photos.app.goo.gl/f8nTBLWj6S4ufDqa6
https://photos.app.goo.gl/ktT1d2Vb5gRxUtvu9
https://photos.app.goo.gl/6TAMihxmxcmJCD5w5

MS Clinic & Neuro Rehabilitation Workshop

By | Mumbai | No Comments

Report on Launch of ‘MS Clinic’ & Neuro Rehabilitation Workshop At Sir H.N. Reliance Foundation Hospital, Mumbai

As MSSI has taken the challenge to create continued awareness about MS in the society & looking after the wellbeing of MSPs, the renowned hospitals who are aware of an increasing number of MS cases in India are ready to offer better care to MSPs by opening specialised MS Clinic in association with us.

We, MSSI MUMBAI in association with Sir H.N. Reliance Foundation Hospital & Research Centre, Mumbai had organized Neuro Rehabilitation Workshop when they were going to Launch ‘MS Clinic” on Saturday, 14th Sept. 2019, at 3.00 p.m. In all 65 people attended the program including MSPs, caregivers, doctors, therapists and others.

The “MS Clinic Launch” program started with lighting the lamp by honourable Doctors of the Hospital & MSSI Office Bearers. Dr. Aashish Contractor, Head of the Neuro Rehab Centre, welcomed dignitaries & invitees (MSPs, caregivers, physio/occupational therapists). He then invited Dr. Arun Shah, Consultant Neurologist & Director, Neurology Services, Sir H.N. Reliance Foundation Hospital, Mumbai, to speak on Epidemiology & symptoms of MS. Dr. Shah also spoke on new research on MS being carried out in their Research Centre.

Then Dr. Manish Chhabria, Neurologist highlighted the Disease Modifying Therapies (DMTs) and their benefits of controlling MS relapses. There was a testimonial by Mr. Thakkar, the spouse of one of the MSPs about the lifestyle changes she has made under the guidance of Neuro Rehab Team at the hospital due to which she is improved and has become independent.

Dr. Hemal Vora, Occupational Therapist spoke about dealing with fatigue in MS.

Dr. Poonam Bajaj, Neuro Physio Therapists who is in-charge of Neuro Rehab spoke on the excellent facilities available at their Rehab Centre showing video clips of patients using various machines like antigravity treadmill, aqua therapy in a pool for improving mobility etc. It was very encouraging.

Mrs. Sheela Chitnis, Founder of MSSI spoke about various services provided by MSSI to MSPs and families. She urged the audience that a person having MS should not think it as a Social Stigma and come forward to register with MS Society to avail the various facilities and share an interaction with other MS families. She also requested all present to offer their services as volunteers for MSSI events.

Awareness Programme at Colleges

By | Chennai | No Comments

The awareness programme on Multiple Sclerosis was conducted in three colleges on various dates in the last month.

1. Loyola College, Chennai.
2. Mar Gregorius College, Chennai.
3. Dharmamurthi Rao Bhahadur Calavala Cunnan Chetty’s Hindu College, Pattabiram, Chennai.

The main aim of this awareness programme was to make young students aware that there is an autoimmune disease called “Multiple Sclerosis”, also called “Crippler of the Young Adults”. Apart from that, the introduction of the Multiple Sclerosis Society, Chennai Chapter, that looked after the welfare of the persons affected by it and its activities.

So far we have covered Social Work Colleges. The students actively participated during the session and leaflets were given to them to study more about this orphan disease. Many have opted to do internships with us.

Awareness Talk at Rotary Club

By | Hyderabad | No Comments

An awareness talk on ‘Multiple Sclerosis’ & ‘MSSI’ was given by Chairperson Meena Gupta on 22nd August 2019 at Taj Tristar, Secunderabad. This was a joint speaker meeting of 4 Rotary Clubs – RC Cantonment, RC Central, RC Deccan and RC Secunderabad East.

There were almost 60 members, and the talk with a presentation was very well received and appreciated by all. We could create awareness in a large cross-section of professionals, businessmen and people from all walks of life. Our MS person Mrs. Arti Mital shared her experience about ‘Life with MS – Visible and Invisible Symptoms’ which touched the hearts of everyone present.

Laughter Therapy

By | Hyderabad | No Comments

“Laughter is always the best medicine
Silence will always be the best revenge
Love will always be all you need”

A very lively session conducted by MSSI Hyderabad Chapter on 18th August 2019.

We all gathered and laughed away our tensions and worries with Mr. Om Seth, The Laughter Yoga Therapist.

It was indeed a hilarious session where highly enthusiastic MSPS got energized enjoyed every bit and learned many laughter therapies which made one point very clear that being happy is very important.

Human race has one really effective weapon and that is laughter.