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Sorry we’ve been so quiet. Here’s what we’ve been up to the past two months…

Plans for the 2012 campaign began in September 2011 when World MS Day (WMSD) was re-launched as a public facing awareness campaign with a new strap-line, ‘1000 faces of MS’, and a new theme ‘Living with MS’.

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Many thanks to the more than 23,900 people who signed our petition, which called on employers and decision makers to improve the lives of people with MS on the International Day for Persons with Disabilities.

The petition, which was launched by MSIF and its member organisations worldwide as part of the World MS Day campaign, was delivered to Ms. Navi Pillay, the High Commissioner for Human Rights, on 2 December 2011, the eve of the fifth anniversary of the International Day for Persons with Disabilities.

Ms. Pillay highlighted the “unacceptable obstacles” that in all parts of the world, persons with MS, and persons with disabilities in general, encounter in the field of employment, including conditions of recruitment, hiring and employment, continuance of employment, career advancement and safe and healthy working conditions. “The vast majority of UN Member States have recognised the importance of respecting the rights of men, women and children with disabilities to the same quality of life as others,” she said. “They must now urgently set about making the promise of the Convention a reality, including by recognising that persons with disabilities have the right to work in an environment that is open, inclusive and accessible to persons with disabilities”.

The Office of the HC for Human Rights leads the global human rights effort and speaks out objectively in the face of human rights violations around the world. Employment has been identified as a fundamental right, both in the Universal Declaration of Human Rights (1948) and in the UN Convention on the Rights of Persons with Disabilities (2006).

Peer Baneke, CEO of MSIF, who was in Geneva to present the petition to Ms. Pillay, said “People with MS and other disabilities have the right to work. Those rights are outlined in the UN Convention on the Rights of Persons with Disabilities and backed up by legislation in many countries. Our appeal to companies and governments is to make those rights real. We hope that the support of the High Commissioner will highlight the importance of this issue and enable us to move closer to more equitable practices for people with MS.”

An MSIF global survey of people with MS in 2009-2010 found that of people who had left work because of MS, 47% had left within three years of diagnosis. It also found that flexible working hours and a place to rest were important adaptations that would have enabled many to stay in work. However, in this year’s follow-up survey of companies, nearly 50% of those surveyed said flexible working was not available in their workplaces. In addition, 70% of survey respondents indicated that they had no quiet place where people with MS, who frequently suffer from fatigue, could rest before resuming their duties.

MSIF is calling on all employers to pledge to make at least one significant change that would enable people with MS and other disabilities to stay in employment.

For more information on the International Day for Persons with Disabilities click here.

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23,987 people signed the petition which will be delivered to the High Commissioner for Human Rights in Geneva today. Stay tuned for more information about this meeting. For now I will leave you with a big thank you!

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On 3rd December 2011, the International Day for Persons with Disabilities, MSIF will present the petition for access to appropriate work to several key decision makers.

This year marks 5 years since the adoption of the UN Convention on the rights of disabled persons. Since the introduction of the convention in 2009 106 countries have ratified the convention, and 63 have ratified the optional protocol, paving the way for many positive steps towards enabling people with disabilities around the world to live full lives, free from discrimination.

Article 27 of the convention refers specifically to the right to work and states that;

‘States Parties recognize the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities. States Parties shall safeguard and promote the realization of the right to work, including for those who acquire a disability during the course of employment, by taking appropriate steps, including through legislation… ‘

Visit the United Nations website to read the convention in full.

Despite ‘the right to work’ being clearly set out as a fundamental human right in both this convention, and in the UN Convention on Human Rights, many people with MS find that there are barriers that prevent them from finding and staying in work. Surveys of people with MS in 2010 found that many of these barriers could be overcome with simple low cost solutions such as designating a place to rest during the day, offering flexible working, and making workspaces more accessible. A survey of employers and managers in 2011 found that very few workplaces had policies in place that might enable a person with MS to stay in work.

Sign the petition

So far we have more than 17,000 signatures on the petition, but we need more signatures to really make an impact when we present it on the 3rd December.

By signing the petition, you will be joining a global movement of campaigners who are working together to improve the lives of people with MS. Join us by signing now.

Don’t forget to check back for more news in the run up to the presentation. We will be releasing details of who we are meeting with soon.

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The climb which is entitled “Leap of Faith Adventure” has been organised by Lori Schneider, the first person in the world with MS to reach the summit of Mount Everest, as well as to complete the “Seven Summits”  and who also makes up one of the climbing party. Technical support comes from “Empowerment through adventure” and you can follow the progress of the climb on their website http://empowermentthroughadventure.com

On the 12^th July the team were interviewed by a local film crew, and they will be interviewed again on the 19^th when they hope to complete the decent of the mountain. On the website you can expect to find these interviews, as well as daily interviews with the team charting their progress and discussing their experiences.  You can also read about the individuals taking part as well as watch footage from the climb each day.

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A human chain in Mumbai

Asia

The MS Society of India (MSSI) reached hundreds of people through events across the country. The aim was to reach out to the public, policy makers, and other key decision makers to raise awareness, promote change, and raise money for the society.

MS advocates took to a busy shopping mall in Delhi to raise awareness of MS. Activities included games, face-painting, short talks and discussions, and entertainers. Mrs Sushma Seth, a famous Bollywood actress, attended the event as a guest of honour and the MSSI raised more than Rs45,000. In Calcutta community events filled the streets of residential areas and drew the attention of local politicians and representatives.  In Mumbai community events aimed to dispell myths about MS and raise awareness amongst employers. A Human chain was organised at every event to show solidarity with people living with MS around the World.

People living with and affected by MS walked to raise awareness in Malaysia

In Malaysia a walking event in the park saw more than 300 people taking part. All wearing striking orange t-shirts. Participants took the opportunity to talk to passers by about the event and the global movement to end MS. In Tokyo MS advocates took to the streets to promote the campaign and talk to passers by about the disease.

Australia and Oceania

The theme of Work and MS formed the backbone of the campaign in Australia this year with a roundtable on employment kick starting future work in this area. Participants came from a number of backgrounds including specialists from the MS Society, government policy advisors, and directors of key government departments,

people with MS, and employers. Points for discussion included current policies that prevent or enable people with MS to access or stay in work, both in the public and private sectors, misunderstanding and discrimination, and care and support for people with MS in the workplace.

Shoppers in Queensland, Australia Kiss Goodbye to MS

Alongside high level discussion and communications with MPs came the launch of MS Heroes, an annual awards program to raise awareness of Employment and MS, and to celebrate the contributions of Queenslanders to the multiple sclerosis cause. The 2011 winners were awarded at the Governor’s Reception in celebration of World MS Day. Griffith University and the Women’s Legal Service were both recognised for the high standards which they have met in supporting employees with chronic illnesses like MS.

Kiss Goodbye to MS continued to be an eye-catching, fun way to raise awareness of MS amongst the public. Beauty therapists at department stores in Queensland painted lips red and shoppers were invited to join in the campaign.

Central America and the Caribbean

In Cuba people with and affected by MS joined with health workers to celebrate World MS Day in Havana and Cienfuegos. A number of lectures were held with participants ranging from representatives of the Cuban Red Cross, the Pastoral Care of Persons with Disabilities Council of Churches, the patron of the MS Foundation in Barcelona, and the Swedish actress Ewa Harring, who is living with MS herself. Entertainment included a number of well-known comedians and the screening of a film entitled The Girl Who Believed in Dreams which is based on a screenplay by Ewa Harring, who took questions from the audience.

In the Dominican Republic people with MS were

Hundreds of people ran for MS in Spain

Europe

Activities in Europe ranged from public awareness raising in France to street performances in the Czech Republic, meetings with MPs and MEPs in Belgium and Poland to a marathon and mass paella eating in Spain.

The meetings that took place in Belgium, organised by MS Steunactie (MS-Support Campaign) yielded real results. One of the organisers said

‘Belgium lags behind in its fight against MS and the impact it has – socially and financially – on the patient’s life. There is no national register, financial support remains insufficient and there is not enough coverage from the media.’

Advocates met with key parliamentarians including the Minister of Health,  Minister of mobility, equality and discrimination, and the Minister of interior affairs, to put forward a list of grievances and potential solutions. The Minister of Health, Mr J.M. Delizée committed to a number of actions including the introduction of a parking card or pass that would enable people with MS to park for free or at a reduced rate in the city, the assessment of all public buildings to ensure that they are accessible to people with disabilities following the introduction of a law to this effect earlier in the year, and to investigate the benefits of a system of financial support to make adaptations to peoples’ homes to make them wheelchair, or disability friendly when necessary.

The campaign continues in Belgium and MS-Steunactie is keeping the pressure on the government with their facebook campaign for change.

Middle East and North Africa

A busy programme of activities took place in Iran including media campaigns, public awareness raising and rug weaving. MS advocates also met with the Minister of health to discuss the issues that most effect people with MS in Iran.

In Egypt people with MS and health workers came together to learn about the latest findings in MS research, care and treatment. The founder of MS Care in Egypt spoke with Deputy Minister – Ministry of State for Administrative Development Mr. Ashraf Hassan Abdel Wahab about the difficulties that people with MS have in finding and keeping their jobs in Egypt.

People with MS celebrate with shoppers in a busy mall in Al Ain, Abu Dhabi

Events took place across the United Arab Emirates to mark World MS Day this year. In Tawam Hospital and the UAE Hospital, an opera was recorded and performed on the 10th and 11th May. The Opera was written by poet Ahmed Ibrahim Al Zarouni and music by Saeed Al Nuaimi. The message is one of encouragement to people with MS to continue striving to achieve their goals and to support each other. In Merdif city centre a group of people with MS took part in iFly Dubai, again to show that having MS doesn’t necessarily prevent you from participating in activities like this, below is a photo of one the participants.

On the 25th May MS advocates in the United Arab Emirates mingled with shoppers in a busy mall to raise awareness of MS. There were various performances and interactive sessions, including poetry by a person with MS, interactive games and a Magic show. Members of the public in the mall were also encouraged to join in.

North America

Clayton Miller raises awareness at Chesapeake Farmers' Market, Oklahoma

In the USA Starbucks employees raised thousands of dollars for the National MS Society (NMSS) through sponsored walks across the country whilst one of the most famous natural landmarks in the world, the Niagara falls changed colour to mark World MS Day. The NMSS also launched their MS= campaign inviting people with MS to share what MS means to them.

MS advocates in the USA continue to be amongst the most enthusiastic in the world with volunteers taking the lead in raising awareness in their own communities. William Khazaal from Seattle brought more than 70 private businesses on board to raise awareness of MS and money for the NMSS.

South America

MS societies across South America took part in the campaign this year. In Chile the MS Society took to the streets to raise awareness of MS, the society, and the global movement with their trademark green apple give-aways, in Brazil and Peru people with MS came together to celebrate World MS Day with Elvis impersonators and meetings with health workers and neurologists, and in Uruguay MS advocates met with policy makers to talk about living with MS in Uruguay.

The Multiple Sclerosis Society of Uruguay (EMUR) is set to become the first country to have World MS Day officially recognised by their government- and just in time for World MS Day 2012.  A delegation of people with MS and volunteers went to El Palacio Legislativo in Montevideo where a draft law was approved declaring the last Wednesday of every May, World MS Day. They are hoping the law will be officially passed in time for next year’s World MS Day, when they will be holding an event for their friends, members, government, medical officials, and the press.

A second delegation met with a member of the Chamber of Representatives who has been involved with a new law concerning the rights of people with disabilities. They discussed the challenges facing people with MS living in Uruguay including transportation, employment, and treatment. Literature about MS and work was presented to the member of the chamber.

Executive chefs prepare for a gormet fundraiser, South Africa

Sub-Saharan Africa

In sub-Saharan Africa activities ranged from a book launch in Namibia to national press coverage in Ghana and a gourmet dinner in South Africa.

The Multiple Sclerosis Society of South Africa (MSSA) Western Cape arranged a gourmet fundraiser attended by almost 100 guests at Grande Provence Heritage Wine Estate in Franschhoek. The event was presided over by Master of Ceremonies Ryan O’Conner, a Patron of MS Western cape and guests were treated to a 5 course feast, prepared by Grande Provence’s Executive Chef Darren Roberts and Michelin star chef Michel Louws.

The guests were encouraged to bid on the Big 5 Auction items, which were donated by the event’s official sponsors, and at the end of the day more than R182,400.00 had been raised in support of the work of the MS Society.

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