It costs around £196 to support one family affected by an MPS or related disease in the UK each year. We are delighted that our Radio 4 Appeal raised £5,035 and this means we can support 25 families through these uncertain times. Thank you 大象传媒 Radio 4 for this opportunity!
Every eight days, a baby born in the UK is diagnosed with a Mucopolysaccharide (MPS) or related disease, which are rare genetic conditions which are all incurable and cause progressive physical disability and, in many cases, severe degenerative neurological deterioration. At the point of diagnosis, many parents are faced with the news that their child’s lifespan will sadly be limited.
At the heart of the MPS Society is our Advocacy and Support Service, which is available at no cost to our 1,500 members. Our five Advocacy and Support Officers take a whole-family approach, ensuring that families have a network of support, expert guidance and information so that their child thrives. This service is available from the point of diagnosis through to bereavement support. The team provide information, as well as practical and emotional support through regular calls, emails and home visits, which are being delivered as video calls during lockdown.
You can find out more about our charity.