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The Ally Cadence Trust for Spinal Muscular Atrophy
Registered Charity No. 1133272
The Ally Cadence Trust for Spinal Muscular Atrophy is a UK Registered Charity. It was set up by the parents of Ally Humphries after she passed away from SMA in March 2009. In the 12 days after Ally's diagnosis they recieved lots of support from the NHS but they never got to meet their allocated SMA support family. They would have been the one point of contact that could see things from a parents point of view and it was mainly this that inspired Ally's parents to set up the ACT for SMA. They felt that parents with recently diagnosed children deserved a quick response to a request for support and information on SMA should it be requested.
The answer was the Ally Cadence Trust for Spinal Muscular Atrophy, a way to provide others with a simple, yet highly important, level of support that is often underestimated.
Ally was a very happy little girl who never stopped smiling, she loved life and woul be proud to have played her small part towards helping others love life too. Having read lots of misleading information online regarding support from other charities and organisations, Ally's family were dissapointed to discover that very little of the specialised equipment was actually available. This was simply due to a lack of funding and so ACT for SMA was set up to try and generate a new line of funding and raise awareness of SMA nationwide.
The Ally Cadence Trust put newly diagnosed families in touch with a support family, and provide most of the specialised equipment needed. They also offer memorial items within the UK to those that have lost someone to SMA, as well as Memorial Websites across the World.
Telephone: 0800 23 43 762 (0800 23 43 SMA)
Email: contact@actsma.co.uk
Rainbows offer specialist respite stays, symptom management, palliative and end-of-life care for children and young people as well as support for the family as a whole. Care is provided by a professional team of highly respected nursers, carers and therapists together with a large support team, under the direction of a team of doctors providing specialist paediatric, palliative care for children in the Hospice and the Community.
There are a total of eight beds at Rainbows, six of these are available for families to made advance bookings for respite care and the other two are booked at short notice for emergency care.
Rainbows aims to provide 1:1 care wherever possible on a needs led basis for all children and young people who use their service. A Minimum of three qualified nurses (two of which are childrens nurses) are on duty at all times, and competency care is delivered by a highly skilled multidisciplinary team.
The Care Team are supported by the Family Support Team who visit families at home or in the community as well as offering support when the children and young people are staying at Rainbows. Their work extends throughout the child's life and beyond into bereavement support as necessary.
Telephone: 01509 638000
Email: administration@rainbows.co.uk
Zoë's Place
Zoë's Place is a home from home for babies with life limiting or terminal illnesses and special complex needs. They offer palliative and respite care for babies/infants from birth to five years old. Zoë's Place do not have a set admission criteria, and do not have a fixed catchment area, meaning they welcome families and their babies from all over the country.
Telephone: 01926 834642
The SMA Trust
The SMA Trust is a UK Registered Charity working to fund medical research into Spinal Muscular Atrophy. They are involved in numerous research projects in the UK and in Europe and the USA. For more information and to read more about current research projects please click on their link below.
Telephone: 07794 012344
Email: info@smatrust.org