Peer Support Network
Although no two people with SMA are the same, our members tell us that contact with others who understand the emotional and physical impact of receiving a diagnosis of SMA or SMARD1 can be very helpful.
That’s why our nationwide team of Peer Support Volunteers is available to support others by telephone and by Email. Each of our Peer Support Volunteers are affected by SMA in some way, be it themselves or a family member.
Our Peer Support Volunteers will not be able to make decisions for you or tell you what to do, but they will be able to share their experiences and help you to explore options. They may also signpost you to other sources of information. Although they cannot give you medical advice, they can share their experiences of managing the condition and coping with practical and daily living issues which arise.
Whether you’re an adult or young person (aged 16+) with SMA, a parent or a grandparent of a child with SMA or SMARD1, we can put you in touch with a volunteer with a similar diagnosis. Whether you’re newly diagnosed or many years down the line, whether you want ideas on a specific issue or just a friendly chat, our Peer Support Volunteers are available to listen without judging.
Volunteers can be contacted by telephone or Email, either for ongoing support and/or to discuss ‘one-off’ experiences, such as tube feeding, housing adaptations, access to work, etc.
To request contact with a Peer Support Volunteer or to find out more about this service, with no obligation, please telephone the Volunteers’ Co-ordinator on 01789 290264. Or contact us
