SMS Foundation UK
Supporting SMS families for a positive future
We are a small charity that supports families living with Smith-Magenis syndrome (SMS)
Never feel isolated or alone. Call our helpline and leave a message: 0300 101 0034 (we aim to respond to messages within 48 hours).
Guidance for parents and carers on navigating daily life with SMS — from equipment and support services to benefits, practical tips, and where to find the right help when you need it.
The SMS Foundation UK has developed a formal supporting statement to help families and professionals better evidence the needs of children and young people with Smith‑Magenis syndrome (SMS) when …
Many families tell us how difficult it can be to explain their child’s support needs every time they visit a new venue or book tickets for an activity. Staff may not understand SMS, hidden …
Some young people with SMS are not able to manage money or apply for benefits by themselves. When this happens, a parent or carer can be authorised to act for them. This is called being a DWP …
When a young person with SMS turns 18, the benefits system changes. Families often move from receiving benefits on behalf of their child to the young person receiving support in their own name. This …
Disability Living Allowance (DLA) is a benefit that helps with the extra costs of caring for a child under 16 who has a disability or health condition. It isn’t based on income, savings, or whether a …
How this statement can be used: parents and carers may include this statement in applications for DWP benefits (such as PIP), EHCP processes, social care assessments, housing or adaptations requests, …
Many young people with SMS will move from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) as they turn 16. This change can feel overwhelming, but understanding the steps …
Families of children with Special Educational Needs (SEN) may at times reach a crisis point, where behaviours and challenges feel overwhelming and difficult to manage safely at home, in school, or in …
Newlife’s Emergency Equipment Loan Service aims to address the specific needs of life-threatened/limited and terminally ill children and their families and/or protect children with disabilities from …
Further reading on Smith-Magnenis syndrome and living with disability can be found on some of these websites. Other SMS Organisations PRISMS (Parents & Researchers Interested in Smith-Magenis …
