Strengthening the MS movement in China

The MS International Federation has been working with people affected by MS in China with the aim of building a sustainable support structure in China.

In May 2012, Clare Pan, a China-based consultant, was recruited alongside the MS International Federation’s consultant Daniel Alberman. Daniel and Clare visited different cities in China and met people with MS and health professionals working in the MS field. Zoe Burr, the MS International Federation’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, while people contributed their experiences to a book of case studies with the aim of raising awareness of MS.

Support structure

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 annual meeting in Beijing in September. MS International Federation CEO Peer Baneke addressed the 350 delegates about the federation 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 Chinese MS in focus were available on the MS International Federation’s exhibition stand. The magazine was so well received that the original print run has already been distributed and a second is being posted across China. The MS International Federation stand also served as a meeting point for young researchers from the region interested in applying for Du Pré Grants and McDonald Fellowships.

Two events organised by the MS International Federation followed PACTRIMS. The first aimed 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 hospitals in Beijing, Shanghai, Guangzhou and Chengdu.

Community

The second event was attended by some 80 people with MS/NMO and their families. People came from different provinces in China as well as Taiwan. The aim of the day was to involve the MS community 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 get involved.

During the second event in Beijing, the MS International Federation 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 into a film.

Looking forward, the MS International Federation is keen to further engage with key community members across China and work with them to help set up new support groups. To achieve this aim, the MS International Federation 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.

Gao’s mother is retired. After Gao became sick, he and his parents moved to Beijing for his treatment. His father does part time work in Beijing and lives elsewhere. The cost of his treatment is funded by his father’s part time work and his mother’s pension. Reproduced with the kind permission of Li YouHao,© 2014 Li Yu Hao

After years in a wheelchair Little Gao is able to walk a few steps with crutches. It is good for him to flex the muscles in his legs and aids his physical recovery. Reproduced with the kind permission of Li YouHao,© 2014 Li