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SMA Support UK & The SMA Trust To Merge As Spinal Muscular Atrophy UK!

Thank you to the 201 people who responded to our survey. 76% of respondents considered the proposal to merge as ‘excellent’, 22.5% thought it was ‘good’. You can read more results from the survey, here.

All comments, including those from anyone who was not supportive, were considered by both Boards and will help to inform the next steps. As a result, both Boards voted unanimously to proceed with the merger at the end of September 2018. The new charity will be called Spinal Muscular Atrophy UK.

Rebrand / Website

SMA Support UK and The SMA Trust will merge key content from their websites including team and fundraising information, so that at the end of September there will be one Spinal Muscular Atrophy UK website. People using old web addresses will be directed there.

Communications

SMA Support UK’s biannual newsletter ‘SMA Matters’ and monthly e-news will continue and be rebranded. We will ensure that all the SMA Support UK and SMA Trust’s teams, supporters and donors who wish to support SMA UK receive ‘SMA Matters’ - the next issue is due at the end of September - and know how to sign up for our monthly e-news.

   

Information and Support Services

These will continue as they are, for anyone in the UK affected by any form of SMA. SMA UK will have the same ‘front line’ information / support / outreach team as now provided by SMA Support UK.

We are currently updating our information sheets in line with the new international standards of care for SMA. We are working with Treat-NMD, Cure SMA, SMA Europe and Muscular Dystrophy UK (MDUK) to produce the international family guide to these. We are also integrating our Route Maps into a new section on the SMA UK website called ‘Living with SMA’. We hope to have this completed by the end of the year.

SMA UK will host a number of support and social events around the country in October and November so that people can meet up. These events will be similar to the SMA Support UK winter events held for many years. More details can be found here.

Advocacy for Drug Treatments

One key focus area for SMA UK will be continuing the work of SMA Support UK and The SMA Trust advocating for access to nusinersen and future drug treatments – in collaboration with MDUK and TreatSMA.

Research, Drug Developments and Clinical Care Updates

SMA Support UK’s Research Correspondents, Dr James Sleigh and Dr Alex Murphy, will continue to bring valuable updates on research to you via e-news and the SMA UK website.

Research Funding Strategy

Research will continue to be a priority for the new charity and development of a new research funding strategy will be a priority for the SMA UK Board, which will have its first meeting at the end of September. In the meantime, you can read a summary of all the support The SMA Trust and SMA Support UK have given to research to date, here.

SMA UK’s new Board of Trustees and Membership

The new Board of Trustees of SMA UK will consist of seven trustees from The SMA Trust and seven trustees from SMA Support UK. It will be chaired for the first year by Jonathon Griffith, the current SMA Support UK Chairman. This new Board will be voted in at the SMA Support UK AGM on 29th September. At the same time, a number of trustees will retire from SMA Support UK and The SMA Trust Boards. 

All current SMA Support UK members will automatically become members of SMA UK on 29th September 2018. Any supporter of The SMA Trust or SMA Support UK who wishes to become a member of SMA UK is welcome to do so at any point before or after the merger.

New trustee names and biographies will be posted to current SMA Support UK members before the AGM and will also be made known to the wider SMA Community.

Impact on Staff

We are pleased to say that no staff have been made redundant as a result of the merger and all staff were offered the opportunity to transfer across to SMA UK. Currently staff numbers remain at the level employed previously by SMA Support UK.

Fundraising

SMA Support UK’s Fundraising Manager, Caroline Dolan, will continue to lead the Fundraising Team. The Fundraising Team will be welcoming teams and supporters from The SMA Trust to join forces with current SMA Support UK funders so that SMA UK can continue to support and work for the SMA Community.

You can read more about this here.

Management

We will say farewell to Joanna Mitchell, CEO of The SMA Trust, in September, thanking her for all her hard work on behalf of the SMA Community. SMA Support UK’s Doug Henderson will become SMA UK’s Managing Director, with Liz Ryburn remaining as Support Services Manager.

Office Base / Contact Details

SMA UK will be based in Stratford-Upon-Avon at the former SMA Support UK office.

Phone numbers for SMA UK will be the old SMA Support UK numbers. Email and website address will change at the end of September. The SMA Trust office will close in September.

If you have any questions about any of this information, please don’t hesitate to contact Doug Henderson by: