Ally Cadence Trust

 

The aim of the Ally Cadence Trust is to provide both emotional and financial support to families living with Spinal Muscular Atrophy (SMA) Type 1.

 

We can be contacted at any time of day or night on our freephone number. If you are worried your child has SMA, you have questions regarding SMA or you just need support/someone to talk to please phone us. We can also put you in touch with your local support family. Please see our Contact Us page for further details.

 

We know how important it is to provide a quick response upon diagnosis, and we will happily provide support to anywhere within the United Kingdom, including home visits, as soon as you are ready. We stock various items of equipment that we can both give and loan out to families upon diagnosis (completely free of charge).

 

 

These items include:

• Pulse Oxymeters (SATS Monitors)
• Apnea Monitors
• Wedges
• Car Seats
• Prams/Pushchairs
• Sensory Toys
• Video Cameras/Digital Cameras

  

Although we cannot guarantee an item of equipment will be immediately available we will do our best to provide the item as soon as we possible can.

 

 

 

 

A. We are here to provide emotional support and help you get all the equipment you need.  We loan the specialist equipment as shown above and will provide you with a sensory toy pack, information pack and daily care advice.  We can refer you to your local Hospice and speak to your medical team on your behalf.  We can also help you find out what benefits and financial support are available to you and help with any forms that need completing.

 

 

 

A. Our phones are manned 24/7 - If for some reason you reach our voicemail please leave a message and we will contact you as soon as possible.  Please do not worry if you are needing advice through the night, we are more than happy to help.  If you prefer to contact us via email please complete the form on our Contact Us page and we will call you back whenever is convenient.

 

 

 

A. We will visit you as soon as we possibly can.  We aim, where possible, to make our first visit within 48 hours of contact, if this is convenient for yourselves.  We can visit weekdays or weekends, during the day or evening to suit.

 

 

 

A. When we visit we will bring you a sensory toy pack, unless you have already been sent this via courier, and any equipment that you would like to loan.  We will also bring information packs on SMA and an information pack with daily care advice.  This has been written by parents for parents.

 

We will advise you on the financial support available along with any other help and support that may be useful to you. 

 

We will talk about as much or as little as you like.  Although we are not medically trained, and cannot give medical advise, we are parents that have been through what you are going through now.  Having had personal experience of SMA Type 1 we can answer any questions you may have from a parents point of view.  We will always be honest with you and do not take offence to any questions asked, no matter how difficult they may seem.

 

 

 

A. We are happy to visit you wherever you feel comfortable.  If you are in hospital with your child and would like a visit this is not a problem.  We just want to ensure that you have all the help and support available to you.

 

 

 

A. We will hold a file with all of your personal information and information regarding your child, the visits that we make and the contact we make with you.  All of this information is available to you upon request.

 

None of this information will be shared with a 3rd party, without your prior consent, and is all held within a lockable cabinet in accordance with our Data Protection Policy.

 

All data is destroyed between 24 and 30 months after the last point of contact, in accordance with our GDPR Policy.

 

 

 

A. We offer a 100% free service, there is no cost to you whatsoever.  Our support workers are all volunteers.  We have reduced fees on our storage facilities and free office space with minimal overheads, meaning the majority of donations can go directly to helping families like yourselves.