Thank you to all of you who took the time to respond to our merger consultation survey – 76% of you considered the proposal to join together as ‘excellent’ and 22.5% of you thought it was ‘good’.
All feedback received has been considered by both Boards and will help to inform the next steps, but the overwhelmingly positive response and the benefits for the SMA community, as highlighted in our recent communications, have meant both Boards have now voted unanimously to proceed with the merger, at the end of September 2018.
Spinal Muscular Atrophy UK
The new charity will be called Spinal Muscular Atrophy UK (SMA UK), a single, unified charity representing the SMA community. SMA UK brings together two entities with over 45 years experience working to help everyone affected by spinal muscular atrophy. The new organisation will continue to provide information and support for those affected by the condition, advocate for better services and access to treatments and fund ground-breaking research towards a cure and treatments for SMA.
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 key 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 that The SMA Trust and SMA Support UK have given to research to date here.
Research, drug developments and clinical care updates
SMA Support UK’s current Research Correspondents, Dr James Sleigh and Dr Alex Murphy, will continue to bring updates on relevant research, via e-news and the SMA UK website.
Advocacy for drug treatments
One key focus area for SMA UK will be continuing the work of The SMA Trust and SMA Support UK advocating for access to nusinersen and future drug treatments – in collaboration with partners MDUK and Treat SMA.
Re-brand / website
Spinal Muscular Atrophy 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 current web addresses will be directed there.
SMA Support UK’s bi-annual newsletter ‘SMA Matters’ and monthly e-news will continue and will be rebranded. We will ensure that current SMA Support UK and The SMA Trust’s teams, supporters and donors will receive ‘SMA Matters’ – the next issue is due at the end of September. Alternatively, if you do not currently receive communications, you can sign up to receive SMA Matters.
Part of the merger between the two charities will involve the combining of supporter databases. All data transferred will be stored /used in line with GDPR. Any preferences you have made about how your data is processed will still be honored and your data will only ever be used in the same way as before. You can see the new Privacy Statement here. If at any time you wish to change any of your preferences, or implement any of your rights under GDPR, you can do so by contacting SMA Support UK on 01789 267520 or emailing email@example.com.
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 and outreach team as is currently provided by SMA Support UK.
The team are in the process of updating information sheets in line with the new international standards of care for SMA, working with Treat-NMD, Cure SMA, SMA Europe and MDUK to produce an international family guide. There will be a new section on the SMA UK website called ‘Living with SMA,’ which will include this content, launching around the end of this year.
SMA UK will also host a number of support and social events around the country in October and November, so that people affected by SMA 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.
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 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.
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 on behalf of the SMA Community.
Management and Administration
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 & contact details
Spinal Muscular Atrophy UK will be based in Stratford-Upon-Avon, at 40 Cygnet Court, Timothy’s Bridge Road, Stratford-upon-Avon, Warwickshire, CV37 9NW. The contact telephone number will be 01789 267520, although the SMA Trust will be reachable on 01608 801020 until the current offices are closed at the end of September. Email and website address will also change at the end of September.
If you have any questions about any of this information, please don’t hesitate to contact Joanna Mitchell, CEO of The SMA Trust on 01608 801020, or Doug Henderson, the MD of the new merged organisation on 01789 267520.