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The following are groups/charities & support pages
for people with conditions like and similar to mine.

Proteus Syndrome Foundation *Link currently unavailable, waiting on update*
For those living with and/or supporting those with the AKT1 mutation

Proteus Syndrome Foundation USA


Support group in Germany
eMedicine World Medical Library: Proteus Syndrome

This group was set up by Adriennne and Chris Blankenship,
the aim to search for a cure, here is the link to the foundation:

There is also a Twitter page:

CLOVES Syndrome Community:

Another group set up by Kristen Davis with an aim to
support families, educate & promote research is as follows:

They also have a twitter page:

There is also a facebook fan page at the following link:

There is also a message board at:

As well as a Facebook CLOVES Community page:

Macrocephaly-capillary malformation (M-CM):

M-CM Twitter

There are also a number of other charities that I support:

This is one that was set up in the name of my favourite actress (Simone Lahbib's) niece Eilidh Brown, who sadly lost her battle with Cancer aged 15 in 2010. The aim of the Memorial Fund is to build and maintain a respite holiday home in the Stirling area for young people and their families who are in treatment for or recovering from cancer.For more details please click the following link:

is is my local RSPCA who I did some voluntary work for, please take a look at their website and at all the good work they do for homeless and rescued animals:


 If you or anyone you know has trouble finding clothes that fit, just like myself then try this company. They have recently made me some combat trousers and they look great:


 In 2011 I took a trip up to Scotland and stayed at Port Selma Lodges.
These are extremely accessible for anyone with mobility problems
The hosts Willy and Jan are lovely people  who will go the extra mile
to make sure your stay is all you dreamed of and more.
Check out their website:

A local group to me called PENDLE POWERFEST  do good work for local 

community by helping raise funds, please check out their website: