Published Date
31/08/2016
Author

Roya Sattari, 27, is an Iranian international student studying for a Pre Masters in Management a Brunel University. She has Limb-girdle muscular dystrophy and has been spending the summer helping our Events team as part of Muscular Dystrophy UK’s Moving Up work experience project. She has previous experience running events for the Iranian Muscular Dystrophy Association and blogs about her experiences of both charities.

How I got involved in Muscular Dystrophy Iran

I found Muscular Dystrophy Iran on the internet when I was researching the condition. After that, I saw a few TV shows where the manager of the organisation gave information and invited people to join. When I read their website I found that people with muscular dystrophy had access to membership facilities like free wheelchairs, doctors’ visits, and events. I met the manager of the organisation at an event; she has muscular dystrophy as well, which is why she decided to launch the organisation with some doctors.

Their office was then located in a small room in a hospital because the government does not provide financial support, as in Iran muscular dystrophy is counted as a special disease, which means a disease that has no cure. Now they’re moving to a bigger place. There are a few employees who work with doctors, the government and translate the latest journals and news about muscular dystrophy, but everyone else is a volunteer, from a range of backgrounds

They run a lot of events because in Iran there is little awareness of muscular dystrophy. Every year many children are born with muscular dystrophy so they’ve tried to raise awareness of the condition using famous people, by inviting them to events and asking them to speak about muscular dystrophy.

My role

I helped to organise events such as concerts, theatres, picnics and worked with children to organise visits to their favourite football clubs, museums, and fulfil their wishes. For example, if someone wanted to see a celebrity we’d organise a meeting between them. For people that had to stay at home or in bed we organised special events: there is a theatre volunteer group that performs plays and stories at the homes of children and adults with muscular dystrophy. One of my wishes happened as well; I wished for a signed shirt from my favourite football team and received one!

I participated in many events: we contacted famous people, advertised our events by giving flyers to people, institutes and restaurants, and put them in other public places. At some of the events we sang songs in our music group of members and volunteers. We sang to promote the group and to make our members to have a good time.

The volunteer members just have one goal: to make the people who live with muscular dystrophy happy.

 

Differences between MD Iran and MDUK

There are many differences between Muscular Dystrophy Iran and Muscular Dystrophy UK.

One difference is that MDUK has its own research team; another is that MDUK employs a professional team with distinct job roles for each member of staff. Because MD Iran is a new organisation with no financial support they currently rely more on volunteers, although they do offer professional advice and support for patients through doctors.

However, there are benefits to being a smaller organisation. I feel that members find it easier to participate in events in Iran and are able to participate in every event run by the charity.

 At MDUK I’ve enjoyed the discipline of the events team and the clear responsibilities for each member of staff. In MD Iran I most appreciated the close relationship between members, staff and volunteers.

 

If you’re interested in getting involved in the Muscular Dystrophy UK Moving Up project please contact Isabel Baylis on i.baylis@musculardystrophyuk.org or 02078032889.

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