Strengthening the MS movement in China

MSIF has been working with people with affected by MS in China to create an MS movement with the aim of building a sustainable support structure in China.

Chinese people with MS come together for the first time following PACTRIMS 2012In the key strategic area of capacity building and emerging countries, one of MSIF’s objectives is to support the development of new MS organisations in countries without one; this programme is being piloted in China.

In May 2012, Clare Pan, a China-based consultant, was recruited to work on the ground, alongside our international consultant, Daniel Alberman. Together, Daniel and Clare visited different cities in China and met with groups and individuals with MS and health professionals working in the MS field. Zoe Burr, MSIF’s Head of Capacity Building, joined them in July visiting Chengdu, Beijing and Shanghai.

As the network of contacts began to grow, volunteers began to work on a website for the Chinese MS community and individuals contributed their experiences to a book of case studies with the aim of raising further awareness of the cause.

The group share their personal experiences and hopes for the future at a meeting for people with MS in China
2012 was a significant year for the MS health community in China as the Pan Asian Committee for Treatment and Research in MS (PACTRIMS) held its fifth Annual Meeting in Beijing, in September. Peer Baneke addressed the 350 delegates on MSIF and its relationship with its members, the research community, and individuals with MS internationally, in Pan-Asia and in China.

Five editions of the newly translated and printed Chinese MS in focus were available on MSIF’s exhibition stand. The magazine was so well received that the original print-run, of five thousand copies, has already been distributed and a second print-run of two thousand copies of two further editions, is being posted out across China. The MSIF stand also served as a meeting point for young researchers from the region interested in applying for MSIF’s Du Pré Grants and McDonald Fellowships.

Two MSIF-organised events followed PACTRIMS; the aim of the first event was to link up key people with MS in China with the professional and MS research communities, underscoring the need for both groups to work together in order for a support structure to thrive. The event was well attended by health professionals from a number of prominent hospitals in Beijing, Shanghai, Guangzhou and Chengdu.

The second event was attended by some 80 people with MS/NMO and their families. People came from different provinces in China and delegates from Taiwan also attended. The aim of the day was to engage with the MS community and act as a catalyst for their involvement in the development of an MS/NMO support structure in China. Creating this sense of ownership and encouraging volunteerism is a challenging task in a country where the NGO concept is relatively new. A small group of individuals from Beijing introduced their plans for the future, encouraging delegates to participate and get involved.

During the second event in Beijing we asked people what it is like to have MS/NMO, the challenges they face, their hopes for a future MS organisation and aspirations for life. Their responses were made it into a film. Thank you to all the people who took part and shared their emotional stories with us.

Looking forward, MSIF is keen to further engage with key community members across China and, with Clare and Daniel, work with them to facilitate the establishment of several new local support groups.To achieve this aim, MSIF will engage with its membership to provide the nascent groups with a range of sources for advice, information and expertise in organisational development. Training, partnership and networking opportunities within, and outside of, China will support the work towards the emergence of a strong, sustainable Chinese support structure which is already participating and benefitting from the global MS movement.

Zoe Burr, Head of Capacity Building, MSIF