Posted on May 28th, 2013
On 26 May 2013, MSIF, assisted by the China MS/NMO group, coordinated an event in central Beijing to celebrate World MS Day.
100 people with and affected by MS/NMO, MS health professionals and journalists gathered to mark both the Day and the collaborative efforts of the MS/NMO group and MS health professionals.
Upon arrival all attendees received a range of World MS Day souvenirs including a t-shirt and mug.
Attendees were also invited to take a copy of the newly printed Listen magazine. A publication put together by the MS community, and managed by a member of an MS group in Chengdu. It is hoped that the publication; with contributions from people with MS across China, as well as information on MS and NMO, MSIF and international research updates; will become a quarterly magazine for the MS community in China with a version available online and in print.
Before entering the main room, attendees wrote their names or a small message, on a World MS Day banner, this solidarity banner will be used at other World MS Day events later in the week.
MSIF China Coordinator, Clare Pan Wang, opened the event and Zoe Burr, MSIF Head of International Capacity Building, welcomed attendees, some of whom had flown in to Beijing to attend.
One of the volunteers involved in the NMO/MS group gave a short introduction of the group’s purpose and work and Prof Xu Xianhao, a well-respected senior neurologist in China, spoke of the necessity for such a group and his hope for the group to grow in to an MS organisation for China.
A poem, outlining the challenges faced by young people with MS was performed by two young people and a neurologist from Beijing. The poem preceded the premiere of a music video put together by the MS communities, the lyrics of the song Beyond the horizon talk of hope people have for the future.
The video will be available on the MS/NMO group’s website (www.msnmo.org) and YouKu (China’s versions of YouTube). It is hoped that, this way, the video will reach out to a new audience and further raise MS awareness.
The launch of the national registration project followed. One of the major challenges faced by people with MS/NMO is registering to see a neurologist. This is particularly difficult for people living outside of the main cities, who often have to queue for many hours to get an appointment.
The project, involving neurologists in 31 hospitals in 13 provinces, will run for the month of June during which time each participating neurologist has pledged to give two appointments per week to people with MS/NMO, without them needing to register.
The MS/NMO group are managing the appointments via the group’s website, which displays the dates, times and locations of the available appointments. Volunteers are responsible for making the appointments for (a) certain province(s) and their numbers are also available on the website.
It is hoped that the project will not only meet the immediate need of people needing to see a neurologist but will expand the MS network at the provincial level with the volunteers reaching out to new people with MS/NMO who have previously not been involved.
The event continued with presentations from Ciwawa (Brittle Bone Disease Charity and a founder of the Chinese Rare Disease Network) and eminent neurologists on MS management and MS and NMO. At the end there was a chance for questions from the floor with an open forum with three neurologists, two radiologists, a psychologist and a representative from a rehabilitation and assisted technology centre.
The event was a real success, further underlining the need and, on this occasion, the results, of joint working between the MS communities. The event is one of many taking place in different cities in China during the coming days with seminars and a picnic planned for later in the week in Beijing alone.
It is truly fantastic to have China be such an active participant in World MS Day and the growing global MS movement it unites.