Past events

On Saturday 7 June 2014 we held our Open Day at the University Hospital of Wales, Cardiff.  The meeting was a great success and patients get very involved in the discussions. The talks included a presentations from patients, a clinical psychologist, talks on acute and cutaneous porphyrias from porphyria specialists, as well as a talk on some new research. There was a question and answer session, and time for informal chats with other porphyria patients and their families. A virtual tour of the laboratories, showed where the tests for porphyria are conducted.

Michael Lake and 2 of his friends, Alex and Stephen, are raising money for the BPA.  His fiancée, Ruth suffers severely from AIP.

They will be running in the Hellrunner down south;  it’s a half marathon distance running through mud, bogs, freezing cold chest deep water and over hills! It’s a hellish course, hence the name but they are very determined men and I have no doubt they will complete the course.

To donate, visit their JustGiving website – at www.justgiving.com/MichaelInHellDownSouth.

They will be running it on Saturday 4th January (this weekend). They have already raised nearly £1,000 through Just Giving, and hopefully they may even get a few more donations before Saturday. All the money will be donated to the BPA to help continue the work wedo. Ruth says she has often used our website to educate herself and others, including health professional, about hercondition. 

The BPA would like to congratulate Ian Burrell and Glenn Blake for successfully obtaining the two BPA charity places for the ‘Ride London-Surrey 100’ which will be held in London on Sunday 4 August 2013.  Ian and Glenn are currently training hard, but they are also very excited to be part of this inaugural event. They will train together over the coming  months and they will then complete the 100 mile bike ride within the day – they are hoping for a time of around 7 hours!

The BPA wish Ian and Glenn the best of luck for the event, and we would like to thank them for all of their hard work and support – ‘Go Norwich Boys’.  Please support them by sponsoring their event – or just seeing how they are progressing – by visiting their JustGiving webpage:  www.justgiving.com/thenorwichboys.

Karen Harris is walking 26 miles in one day (18th May, 2013) for The British Porphyria Association “because she wants to help us to continue to help others”.

With her will be Sian Harris, Wendy Hicks and Candy Elsworth.

Please support her by sponsoring her on her JustGiving page:

www.justgiving.com/Pilatesgirls

In May 2013, there is an International Patient Conference in Lucerne, Switzerland.  Quite a number of you came to the previous international patient day last year in Cardiff. We had very positive feedback about it.  If you fancy a holiday in Switzerland, why not come to this one-day conference, on 18th May 2013.  It will include talks by doctors on the latest information on porphyria, and talks by patients and patient organisations.