Working with MS Home in China

Abdelfatah Ibrahim, MS International Federation’s Regional Capacity Building Manager, recently visited China with consultant Daniel Alberman. This is his report.

Despite a lack of sleep after my long flight and the onset of jetlag, Sunday proved to be a great start to our visit. I had the chance to deliver training on project design and organisational capacity assessment to a number of rare disease organisations working in China.

The day gave me a real insight into the lack of awareness of rare diseases in China, often causing those affected to be stigmatised and isolated. One rare disease organisation had their neighbours leave for fear of contact with the people who visited their office.

Enthusiastic

The rest of my visit focused on supporting MSZJ (MS Home), a new MS/NMO group. Through a series of training sessions, I worked with key volunteers to develop their vision, mission and objectives. This was a good chance for me to better understand MSZJ and the challenges faced by people with MS/NMO in China.

MSZJ was founded and is now run by two young enthusatic people; one has MS and the other has NMO. ‘Emerging and keen to learn’ are the best words I can use to describe them, keen to learn new skills that can help develop their organisation and, in turn, benefit people with MS/NMO in China.

Direction

The visit ended as positively as it began, with MSZJ having developed an organisational plan. In the months to come, I hope that MSZJ will use this plan to develop their projects and, in parallel, continue to invest in improving their organisational capacity. MS International Federation will be returning to China in 2015 to continue to support MSZJ in their work.

MSZJ’s vision
减轻压力、消除障碍，让中国每一个受MS/NMO影响的人更好地生活。
By reducing pressure and eliminating barriers we will enable each individual affected by MS/NMO in China to lead a better life.

MSZJ’s mission
增强组织内部运作能力，为中国每一个受MS/NMO影响的人提供信息、康复及心理支持，提高医疗可及性和提升公众意识而努力。
Strengthening the operational capacity of the organisation, to provide each individual affected by MS/NMO in China with information, rehabilitation and psychological support, and promoting access to treatment and increasing public awareness.

Xiao Yan (a pseudonym) third from the right, is 21 and from Jilin province. She has had MS for 3 years. Xiao Yan (a pseudonym) third from the right, is 21 and from Jilin province. She has had MS for 3 years. Reproduced with the kind permission of Li YouHao,© 2014 Li Yu Hao

A physio is helping Little Gao once a day with his exercises. His family pays around 3000 Rmb (300 pounds) a month for this treatment alone. Reproduced with the kind permission of Li YouHao,© 2014 Li Yu Hao

Wu Yanxiao can take care of herself. Today she is going to the hospital for an appointment. Her friend is driving her. She gets into the car on her own, folds and stows her wheelchair all by herself.

Jia Fenmei, 54, from Beijing has had MS for 10 years. She is going for a stroll in a nearby park after her acupuncture treatment. Reproduced with the kind permission of Li YouHao,© 2014 Li Yu Hao