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Fundraising and Donations

The PSF UK raises money for the following:

  • To cover the costs of running the support group
  • To provide financial support for families
  • To fund research

Fundraising activities and events take place throughout the year and include:

  • Sponsored events
  • Raffles
  • Buffet nights
  • Fashion shows
  • Appeals to companies and individuals
  • Presentations to groups

How can you help?

We are a voluntary group and have limited funds. We rely entirely on donations and monies raised through fundraising events. We need more money for research into PS. Finding the cure could mean a better life for those affected. With advances in technology, it may be possible in the future to stop PS in its tracks. Without this, children have to suffer its progressive nature often requiring repeated surgical intervention. Also it is not known to what extent PS affects life expectancy.

In addition, to keep the support group going, we need money to cover basic administrative costs. These include paper, envelopes, postage, photocopying and telephone expenses. Without these we cannot produce newsletters, send out information or maintain contact with our families. Finally there are times when families need practical help. This could be for essentials such as shoes, which for some children suffering from PS is a never-ending problem. Many children with PS suffer with foot deformities and are supplied shoes from the NHS. These are not always very attractive and a special pair may be needed for leisure or special occasions. We also try to make available funds for private appointments and treatment. Because PS is progressive, sometimes at a startling rate, children may require urgent attention, not possible with NHS waiting lists. Those affected by PS and their families would be most grateful for any support you are able to provide.


Any postal donations should be sent to:

Tracey Whitewood-Neal, 2 Watermill Close, Bexhill-on-Sea, East Sussex, TN39 5EJ, UK.
Cheques should be made payable to 'The Proteus Syndrome Foundation UK'
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