Resource Hub
Resource Hub
Open the tabs to see our range of leaflets, information guides and books.
We are accredited to the Patient Information Forum (PIF) TICK Quality Mark. This confirms that our SMA-related information has been through a professional and thorough production process. It is based on reliable, up-to-date evidence which is communicated clearly.
Any child with SMA should have an individual Emergency Healthcare Plan (EHP). This is a written plan of action that any medical team can follow should a child become unwell.
Sometimes families need to take their child to Accident and Emergency (A&E) Services at a local hospital. Frequently, clinical staff there will not have come across SMA. We have worked with clinical experts to produce an information sheet for families to give to the A&E team, along with any individual EHP they may have. It provides information that will assist them with their assessment of the needs of a child with SMA.
New inspiring children’s book all about SMA and living with the condition.
This beautifully illustrated and informative book brings together the real voices and diverse experiences of children, adults, caregivers and clinicians, and researchers in the SMA community. Thanks to all who contributed to make this possible including our funders, Biogen.
Smasheroo: ‘A person or thing of superlative quality or importance etc. a ‘smash-hit’.
Written by Hania Myers, mother of a child who has SMA. This uplifting story for younger children highlights that everyone is different and everyone is special in their own way.
Any family affected by SMA, living in the UK, can request a free copy of the book.
As well as the leaflets and books listed above, you will find many useful guides on our website pages. We can provide printed copies of these.
We also have a Getting Ready for School pack > which you can order separately.