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.

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

They decided  to try to raise some money for a good cause – the British Porphyria Association.

If you wish to support their fundraising for the BPA, go to Rachel and Kevin’s JustGiving page

Mathew Binns running the Marathon of the North

Mathew Binns has developed Binnsey’s Big 3! Matthew is planning these 3 events as a personal challenge and he decided that with all this sweat, pain and exhaustion he should try to raise some funds for the BPA.  Porphyria is close to his family’s heart and Matthew hopes that his efforts this year to raise £1000 can go in some way to support the work of the BPA.

Matthew quotes: “It goes without saying that endurance events take a lot of time for training and a lot of effort to achieve, and I wouldn’t have achieved any of these results without the loving support of my family and in particular my beautiful wife, Kristina, who constantly ensures that I stick to my training plan and is always on hand to patch up my aches and pains.  I couldn’t do it without you, Kris!”

Matthew Binns is completing the following ‘3 Big Ones’ in 2012:
Marathon of the North.        6 May 2012   done at the  Stadium of Light, Sunderland
Epic Swim                              15 July 2012                Ullswater, Cumbria
Vitruvian ½ Ironman           8 September 2012     Rutland Water, Rutland

If you would like to follow Matthew’s progress and support his fundraising activities, please see his JustGiving page

The half marathon is on 19 feb.
For more information, see the article about it in the Kenilworth weekly news.

If you would like to sponsor her, read the messages and show your support, click on the link below:
www.justgiving.com/thehelengibbstrustfund?ref=nf

Amy has been involved in the organising of the may ball to raise money for the Helen Gibbs Trust fund which supports the BPA.

Any BPA member is invited to join us.

We will have registration and refreshments at 1.30 for a 2pm start.

The conference will include a brief AGM of the BPA.
Both skin and acute porphyrias will be covered.
We will have a clinical talk on EPP by Prof. Tim Cox, followed by one on National Commissioning for Porphyria, by Dr Penny Stein. Both are porphyria experts from Addenbrookes Hospital, Cambridge.
We will also have shorter talks by patients, on their experiences with porphyria;
Then we will havea question and answer session, with both BPA patients, and porphyria clinical specialists on the panel.

We will finish with tea and coffee, and informal chats, between 4.30 and 5pm.

We hope many of you will be able to come to this friendly and informative meeting.

We will be using the William Mong building in Sydney Sussex College

We will have a clinical talk on EPP by Prof. Tim Cox, followed by one on National Commissioning for Porphyria, by Dr Penny Stein.