Blog

We are pleased to announce that we have filled our two places for the annual Ride London-Surrey 100.  Ian Burrell and Dougal Betts will be training hard over the coming months in order to be fully prepared to ride 100 miles in one day on Sunday 10 August 2014.  They will also be working hard to generate their sponsorship goal of £1,000 for the BPA. You can follow their training and journey by looking at their JustGiving page: www.justgiving.com/Ian-and-Dougal where you can also sponsor them if you would like.

Ray Lancaster, one of our loyal BPA members and porphyria sufferers, has organised the Revolution Custom & Classic Van Club Show in Skegness, to raise awareness and funds for the BPA. Van owners and enthusiasts will be coming from all over the country to show off their vans: self-builds, work vans, pick-ups, works in progress, and characterful wrecks. There will be entertainment and competitions (for adults and kids), including blind driving!

The event will be held at the Pine Trees Leisure Park, Croft Bank, Skegness Lincolnshire, PE24 4RE (Tel: 01754 762949). For an overnight stay at the camping/caravan site, bookings are £12 a pitch or £14 with electric hook-up. Bookings are to be made directly with the venue, quoting ref: BPA.

If successful, Ray hopes the event will be repeated annually. Additionally, anyone who is interested in helping with the event/a stall can contact Ray (details below) or Liz Gill on 0300 30 200 30.

If any business or individual has a raffle prize that they would like to donate, then please let us know.

For more information, or to buy raffle tickets please contact Ray Lancaster on 07799 392 771 or magicoazulcc@yahoo.co.uk.

Our BPA Autumn Conference and AGM will be held in the Mayo Building at Salford Royal Hospital, Salford on Saturday 6 September 2014 and will run from 10:45am to 3:15pm. The meeting is free to attend.

The programme will start with registration and refreshments at 10:45am, for an 11:00am start. An hour-long lunch break will also be provided to allow ample opportunities to informally meet and talk with other porphyria patients and their families. The meeting will finish with a final refreshment break at around 3:00 to 3:15pm.

There will be a clinical talk from Professor Felicity Stewart, a talk on living with EPP pain from a mother and her son, a talk from a patient with AIP, as well as plenty of formal and informal opportunities to ask questions with clinicians or to talk with other people with porphyria. In addition, Joanne Osman and Liz Gaskell from the Salford Royal Photobiology Unit will be available over the lunchtime period to talk to members and advise on sun protection.

If you would like to attend, please contact us for more information and directions: 0300 30 200 30 or helpline@porphyria.org.uk.