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Spinal Muscular Atrophy (SMA) is a complex and rare neuromuscular condition that affects each individual and their family differently. We will always be respectful of each person’s needs and choices. All face the challenge of obtaining the right support, care and opportunities to enable them to live long and fulfilling lives; some face the distress of early bereavement.

We are registered with the Charity Commission (No. 1106815) and comply with the Charity Commission Code of Practice.

Our promises to you

We respect your privacy and look after your information:

  • Any information, including personal and financial information, that we hold about you is kept securely and treated confidentially. You can read our Privacy Notice and our full Confidentiality and Data Protection Policy
  • We will never share your personal information or data, or sell it to any other person or organisation, unless we are legally required to do so or have your specific permission
  • We will never buy personal data or engage with third parties to access personal data
  • We never make any ‘cold’ or uninvited fundraising phone calls requesting money

We are committed to a policy of zero tolerance of abuse and neglect:

You can read more about how we work to safeguard children and adults.

We support anyone affected by any form of SMA. We encourage anyone, affected by SMA or not, to support our work:

  • This is irrespective of a person’s protected characteristic: age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity (which includes breast feeding), race, religion or belief, sex, sexual orientation. You can read our Equality, Diversity and Inclusion Policy.
  • We produce SMA related information that is accessible, clear, accurate, impartial and evidence based. It is up to date when published and regularly reviewed. We are accredited to The Information Standard. You can read our Information Production Policy.
  • Our Scientific and Clinical Care Research Correspondents and Research Coordinator keep us in touch with SMA related developments. We regularly publish their updates on our website

We are honest, open and careful about how we spend the money we are given:

  • We only ever spend our available funds on supporting the SMA Community
  • We tell you how we have spent previous donations. Please see our latest Annual Report
  • We make clear plans about how we will spend any new donations
  • As we provide information and support to anyone affected by any form of SMA anywhere in the UK, our travel and phone costs are significant. We use email, social media and skype whenever possible to keep our costs down. We keep our overhead costs such as rent, utilities and stationery as low as possible
  • The salaries we pay our staff are benchmarked against salaries paid in similar jobs in similarly sized organisations. They are scrutinised and set by our Board Executive Officers.

We are respectful, reasonable and accountable:

  • Our Support Services are free. We never put people under any pressure to make a donation
  • If someone wants to stop making a regular donation we always respect their decision and make this easy for them
  • We always try to thank people for any donations or other support they have given us
  • If we make a mistake or get things wrong, we will be open about this and do our best to correct what we have done and, at the very least, apologise and learn from our mistake
  • We comply with all relevant laws and regulations
  • If you have a complaint, we follow our Concerns and Complaints Policy

We aim to communicate well with the people we support and the people who support us:

  • We try to keep people up-to-date with news about any changes relating to access to drug treatments, services and benefits, SMA research-related updates, consultations and campaigns, fundraising information and other items we think will be of interest. This is via our website noticeboards; Twitter; Facebook; Instagram; our monthly E-News; our twice-a-year mailed or emailed ‘SMA Matters’ newsletter
  • We try to send these communications to you in a way that suits you. You can let us know your mailing preferences and it’s easy to unsubscribe at any time
  • If you have agreed to more personal contact, we will do our best to make sure this takes place at times that are convenient to you

We carefully recruit, train and look after our staff and volunteers:

  • We ensure they are appropriately qualified and competent for any tasks they are asked to undertake

We have in place all necessary policies and procedures to ensure our organisation is run safely, legally and competently:

  • Our policies and procedures are all reviewed as regularly as possible and always if there is a change in legislation, Approved Codes of Practice or Charity Commission Guidance or after an accident or incident
  • If you have any questions or feedback about any of our work or any of our promises, please do not hesitate to contact us: or phone 01789 267520.

SMA UK is a member of the Fundraising Regulator and adheres to all the industry standards and rules of engagement.


SMA UK is accredited to The Information Standard.