Society for Mucopolysaccharide Diseases

Rare but not alone

Every eight days, a child is diagnosed with a Mucopolysaccharide (MPS) or related disease in the UK. These are genetic multi-organ storage diseases. We want to support and help bring families affected by MPS and related diseases together, encouraging them to build connections.

history Campaign has now closed

It ran from 12:00 PM, 1 December 2020 to 12:00 PM, 8 December 2020

open_in_new http://www.mpssociety.org.uk

Registered Charity in England and Wales (1143472)

Check mark Match funded

Campaign target

£15,000

Amount raised

£17,593

Donations

140

Championed by The Julia and Hans Rausing Trust

    Category

  • Health/WellbeingHealth/Wellbeing

    Helping

  • Children (3-18)Children (3-18)
  • People With DisabilitiesPeople With Disabilities
  • Young People (18-30)Young People (18-30)

Location

United Kingdom

  • The MPS Society have been an invaluable support to our family, something we will be forever grateful for. The MPS Society sent their support officers to explain the nature of the disease, to advise on care plans and most importantly, to offer a shoulder of support.

    — Shelly, MPS family

  • When we were struggling, the MPS Society helped us to hang on to family life. The future may be uncertain, but I know the MPS Society will be there to help us every step of the way. They are part of our family.

    — Bob, MPS family

  • Thank you very very much for a wonderful day at Lapland UK. Mrs Christmas was so kind to Blossom, she told her she had a wonderful elf name and on the way out she said 'keep blooming Blossom'. I didn't know Lapland would be like that, it was incredible. We loved all of it.

    — Georgina, MPS family

Situation

There are around 1,500 families affected by MPS and related diseases throughout the UK. Affected families come from a wide variety of geographic, cultural, social and economic backgrounds. The lack of awareness means that families often find themselves having to deal with professionals who simply do not know enough about MPS and related diseases and the complex and continually changing needs of individuals with this kind of degenerative condition.

Solution

We will build connections through support and our family events. We will do this through our Advocacy and Support Service which is available at no cost to our 1,500 members. Our Advocacy Support Officers take a whole-family approach, ensuring that families have a network of support, expert guidance and information. We will also hold a number of family events in 2021 so we can bring people together and encourage families to build connections with others who understand their experience.