Membership, Trustees & Governance

We are registered with the Charities Commission as a membership organisation.


Members are people who are interested in how SMA UK is run and who may want to contribute their ideas about how we can best meet the needs of people in the SMA Community.

To be a member you must be 18 or over and live in the UK. You don’t have to have SMA or use our information and support services. You can join individually or as a household. Membership is free.

Members receive a copy of our Annual Report and minutes of our Annual General Meeting. They are invited to vote when we elect new Trustees (see below) and can decide to stand for election themselves.

If you / other family members in your household wish to join, please download our leaflet and fill in the form. You can either print and post it to us (address supplied) or you can take a photo / scan it and email it to


25th March Update: We have had massive support and encouragement during 2019 from our Chair, Hugo Van Vredenburch. He has now stepped back from this role but remains an active Trustee. On 3rd March 2020, we welcomed Mark Dearlove, previously Chair of the SMA Trust, as a new Trustee and Chair. He has already proved a great adviser and joins Katharine Jackson, our Treasurer, who has been with us since last summer. Neither they nor we, on the operational side of the Charity, can magic any solution to our massive drop in income, but they are in regular contact advising Caroline Dolan, Fundraising Manager, and Liz Ryburn, Support Services Manager, as we do our best to survive the Covid-19 financial and economic crisis. You can read more about Katharine and our other Trustees if you follow the link below. Mark’s profile will be added very soon.

Our Trustees represent the membership and are responsible for governing the charity - making sure we are doing our best to respond to the needs of people in the SMA community.

Who they are now

Their roles and responsibilities

If you have read about the role of a Trustee and are interested in volunteering, please contact Support Services Manager, Liz Ryburn, on 01789 267520 or email