One of MSIF’s strategic priorities is to support and encourage the development of new, emerging and existing MS organisations and groups through capacity building activities.
We work to build the capacity of national or local structures, which we believe – with their contextual knowledge, cultural awareness and local language – are best placed to meet the needs of people with and affected by MS living or working in the country.
Our capacity building work is currently focused on the Arab region and China.
In 2017 our new five-year strategy will be launched. Within capacity building we will continue to implement our existing programmes, but will also expand our regional work to include Latin America.
We have developed two approaches to address the needs of MS organisations in the Arab region: a country-focused capacity building programme and a region-wide programme
Country-focused capacity building programme
This comprehensive three-year organisational development programme focuses on building the capacity of selected organisations, working towards self-sustainability in key areas of need.
The 2013-16 Programme has involved the Society of Lebanese Friends of Patients with Multiple Sclerosis (ALSEP), MS Care Society Egypt (MS Care) and Multiple Sclerosis Friends Society in Palestine (MSPF). These organisations’ volunteers have received mentoring and training in strategic planning; public relations; fundraising; MS counselling and website design and development. They have also had the opportunity to attend MSIF’s meetings and participate in partnership working with MSIF members.
“(The) MSIF capacity building program was the agent that powers our purpose and direction. The continuity of this program throughout three years helped ALSEP to fulfill its mission and sustain itself. We became able to articulate value and tie strategy to mission and society capacity. It also allowed us to drive our mission forward, meet our goals and have a real impact on the community we serve.” – Wissam Al Hajj, Board member, ALSEP, Lebanon
This programme targets all of the organisations in the region. Activities have included webinars on psychological support and communication, a Facebook group connecting 17 organisations in the region, translation of MSIF’s e-newsletters and publications into Arabic for dissemination, and quarterly e-bulletins now reaching 28 organisations and groups celebrating regional work and events. Small grants are made available to MS organisations to produce materials and build their profile and regional workshops have been held regularly with the most recent held in collaboration with MENACTRIMS, with 34 delegates from14 countries representing 19 MS organisations in attendance.
MENACTRIMS provided MS organisations in the region with the opportunity to come together to build and strengthen relations and identify areas of mutual interest, creating a climate in which new initiatives can emerge. At the workshop MS organisations in MAGHREB (Morocco, Tunisia, Algeria and Libya) agreed to set up a coalition. This was also the first time MSIF organised an event integrated into a research and medical conference forging stronger links between the capacity building programme and the MS research community.
“AMMASEP was able to improve the quality of its work and dealing with others particularly with funders and attracting volunteers.” – Rachida Tenouri, President, AMMASEP, Morocco
Since 2011, MSIF has been running a pilot programme of initiating and supporting the development of a sustainable MS group or organisation in China. Whilst there is growing engagement, there is not yet a self-reliant national organisation.
We have established and strengthened a national network of people motivated and active in MS awareness raising, information provision and professional and peer support. We have produced five issues of a magazine produced by people with MS – Listen magazine – in Chinese, with a total of 2,500 printed copies being produced in addition to online availability. In 2016, our small grants enabled five MS community-led World MS Day events to take place in Beijing, Shanghai and Jinzhou.
“Reading the 5th issue of “listen” allows me to see the tenacious struggle of the patients living with the disease. They are not depressed, they do not give up hope. Self-acceptance gives power to overcome the disease…. My confidence has been restored and I have the courage to continue… ” – a recipient of Listen magazine