Elizabeth

Our Autumn Conference and AGM will be held at the Holiday Inn Peterborough West on Saturday 1^st October 2016 (10am to 4pm), with the support of Dr Stein and the team from Kings College Hospital London. Again, we will have updates on Clinuvel and Alnylam as well as various other talks from doctors, nurses and patients about living with porphyria. There will be plenty of opportunities to talk with others affected by porphyria, as we plan to group sessions together to allow a specific cutaneous section and an acute section, meaning that people will be able to use a breakout room for informal discussions, instead of attending talks that may not be as relevant to them.

Please let us know if you would be interested in attending as, based on the popularity of our 2015 events, we expect places to fill quickly. Please forward the names of anyone wishing to attend with you to: sue.burrell@porphyria.org.uk or call 0300 30 200 30 to confirm your attendance.  The BPA will send further information to those interested a few weeks before the actual event.

Our Open Day will be held on Friday 8^th July 2016 (10am to 4pm) at Salford Royal Hospital. We will have some updates on developments with regards to access to SCENESSE (a potential treatment for EPP) and the Alnylam research (a potential treatment for the acutes), as well as talks from specialists and patient experience talks from EPP and AIP patients. We are also excited to be trialling a slightly different structure for the meeting. In addition to these structured talks, we also plan to have some ‘table’ style discussion groups to focus on different aspects, such as issues affecting children and teenagers, the various transition stages for the different porphyrias, as well as tables for patients and those providing support to patients, to name a few!

Please let us know if you would be interested in attending as, based on the popularity of our 2015 events, we expect places to fill quickly. Please forward the names of anyone wishing to attend with you to: sue.burrell@porphyria.org.uk or call 0300 30 200 30 to confirm your attendance.  The BPA will send further information to those interested a few weeks before the actual event.

For the second year running, Ray Lancaster and Jenny Coombs are organising the Revolution Custom & Classic Van Club Show in Skegness, to raise funds for the BPA. Van owners and enthusiasts will be coming from all over the country to show off their custom vans. There will be entertainment and competitions for adults and kids! Starts at 10am each day.

The event will be held at the Pine Trees Leisure Park, Croft Bank, Skegness Lincolnshire, PE24 4RE (Tel: 01754 762949). £1 entry at the gate. £5 per day for vans showing, but not camping. For an overnight stay at the camping/caravan site, bookings are £14 a pitch or £16 with electric hook-up. Bookings are to be made directly with the venue, quoting ref: BPA. http://www.pinetreesholidays.co.uk.

Anyone interested in helping with the event/a stall can contact Ray on 07799 392 771 or magicoazulcc@yahoo.co.uk. If any business or individual has a raffle prize that they would like to donate, then please let Ray know.

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.