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1450094852Bearfactsissue70m The PBC Genetics Study Research Team 01223THE 769088 BEAR FACTS SPRING 2015 Issue No. 70 Support for Life ‘How would your life be if the PBC Foundation did not exist?’ is the question that was asked CONTENTS of me some weeks ago. My immediate Nationwide Thanks ................... 2 response was to think of the time I would PBC Clinic ................................. 4 have to spend on other pursuits, offset of course by the time spent seeking out reliable View from the Bar ..................... 7 sources of PBC information and finding Money Matters .......................... 8 some means of support for my illness. And then, once I’d made a start in these Regional Volunteers .................10 endeavours, how could I resist sharing it Dates for Your Diary .................13 with people around the country in similar circumstances to my own. Maybe then, if I Project Uk ..................................14 received a positive response from my fellow Your Letters ...............................16 patients I could start up a Support Group which would lead to a charity. Ultimately, as this train of thought reveals, Fundraising & Awareness........18 SPRING 2015 NEWSLETTER I think the existence of the PBC Foundation is inevitable until the day Food for Thought ......................20 we find a cure. And may that be not far over the horizon! any things have changed over the nineteen the Bear Facts to over sixty six counties worldwide. Myears that the Foundation has given to This publication alone removes, for thousands of PBC supporting positive aspects in the life of those with sufferers, the crushing isolation that was prevalent PBC, their families and friends. This month, May before the Foundation existed. 2015, sees another significant change when the name ‘Primary Biliary Cirrhosis’ is replaced with e are looking forward to celebrating the Foundation’s ‘Primary Biliary Cholangitis’ throughout the entire twenty year anniversary next year and we will be world. An overwhelming number of our members Wtalking and writing about the many advances in the as well as medical professionals, motivated by the care and support of PBC that you, the team and I have need to remove the negative connotations of the achieved over the years. I heard from two of our very first word ‘cirrhosis’, have successfully campaigned for volunteers the other day, John and Teresa Pawson from its removal while retaining the acronym PBC. We Lincoln. We talked about the old days and how things at the Foundation accept that the name change is have so much changed for the better. More in the next not universally welcome but feel that the wishes of issue but in the meantime, we would love to hear your a large majority of our members must be respected stories – please do keep sending them in to us, it is a and, as in this case, successfully implemented. joy sharing your experiences with all of our members. Such is the power of patients’ support groups! Amongst many others who played a part, the main I am sure we will be sharing stories of our next drivers were: Prof Ulrich Beuers, Prof Robert Gish, International PBC Day which is 13th September 2015. Prof Raoul Poupon, Ingo van Thiel and EASL. The No doubt there will be some whacky scheme here in PBCers also responded kindly and positively to the office that somebody will have dreamt up for us to our request for support. carry out! ne of our earliest achievements was having The question I would now like to ask you – how would the best quality information on PBC available your world be if the PBC Foundation did not exist? Oin leaflet formfree for all in need. We quickly went on to supply a leaflet on PBC specially written I look forward to hearing your thoughts and experiences. for GPs, again without charge. Our membership is entirely free to anyone who would like our Keep well, help and support and, as you know, we supply Spring 2015 1 The Bear Facts NATIONWIDE THANKS The PBC Foundation (UK) Ltd NATIONWIDE THANKS Helpline Number NATIONWIDE THANKS 0131 556 6811 Our grateful thanks go to each and every one of you who has taken the time and made the effort to raise money for the PBC Foundation (UK) Ltd. Without your help, dedication and selfless acts of generosity, in whatever guise, we would be, quite simply, unable to continue our work. It never ceases to amaze us here on the team how diverse and ingenious some of the fundraising ideas are: quite often truly inspirational. On behalf of our members, present and future, our sincere thanks to you all. Anglesey Ladies Lunch Lauds Phyllis Congregation Donation from Dalmeny Kirk We were delighted to receive a donation of £65 raised Dalmeny Kirk just outside Edinburgh, may well be through a raffle, held during a monthly ladies’ lunch known for its beautiful architecture and is indeed in Anglesey, Wales. The group held the raffle for considered the most complete example of a Norman the Foundation because their local member, Phyllis church in Scotland. It is also evident they have Dunne, has PBC – a condition which hardly any of warm hearts and a generous spirit among their the group had heard of. We’ve had some wonderful congregation too. A retiring collection following comments over the years but surely there are few the Communion Service in March raised a much better testimonials than the comments from the appreciated donation of £83.04. The Kirk also ladies that Phyllis was looking so good for eighty five provided the location for two of our dancers to train years old that we, as an organisation, must be doing in preparation for the Strictly fundraising event in something right. Our grateful thanks to the ladies for February. Our sincere thanks to all at Dalmeny Kirk their support and our best wishes to Phyllis. for their kind consideration of our cause. -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- Coleraine Colleagues Collection Benefits PBC Demon Dancers Jive the Night Away in Fife John and Irene Porterfield of Demon Dance organised a Christmas Charity Ball in Dunfermline to raise funds for the PBC Foundation. “Jive Aid”, as the event was known, brought dance enthusiasts together from all corners to enjoy a thoroughly entertaining night. The event was held in the stunning Glen Pavilion building, situated within Pittencrieff Park, the park itself being a gift from the world renowned philanthropist Andrew Carnegie, to the people of Dunfermline. We know John and Irene’s event was a resounding success and the participants will not have been out of place in a venue that has seen rock superstars Big Country perform. Proceeds from the event and the raffle held Joan Millican of Co. Londonderry, has had PBC on the night, raised a staggering £2,271 for the PBC for twelve years and works part-time for the Social Foundation. Our sincere thanks to everyone who Security Agency in Coleraine. Having attended a participated, all who attended and in particular, John workshop run by us in Northern Ireland, she was and Irene for their generous consideration of our enthusiastic about the opportunity it provided to speak cause. to other sufferers. She was equally enthusiastic in -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- galvanising her colleagues to raise money for the Foundation and we were delighted to receive a Sisters Make a “Moray”mint for PBC cheque for £72 from Joan, together with a picture of You’ve heard of money for old rope, or where there’s her being presented the cheque by Sharon Anderson. muck there’s brass? Well this was never more true Many thanks to Joan and her colleagues. than in Morayshire where our Regional Volunteer, The Bear Facts 2 Spring 2015 The PBC Genetics Study NATIONWIDE THANKS Research Team NATIONWIDE THANKS 01223 769088 NATIONWIDE THANKS Irene Ferguson, and her sisters Trisha and Diane coming to the Foundation. Last year, Julia raised worked throughout the year attending car boot £125 in sales and she has already started work on sales. Along with raising vital funds, amounting to 2015’s stock, so get your orders in early. We can a grand total of £1,000 over eleven months, they only admire Julia’s creative skills and thank her most raised awareness of both PBC as a condition and sincerely for her continued support. the existence of the PBC Foundation. Bravo ladies, -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- our grateful thanks for your continued efforts and invaluable support. Linda Turns Back Time on Tyneside -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- A “Luxury” Donation from Northamptonshire it’s “Fair” to Say In November 2014, Luxury Fairs (www.luxuryfairs. co.uk) held a Luxury Christmas shopping event at the Great Barn, Aynho, Northamptonshire. This prestigious event saw local craftsmen and woman sell beautiful goods to bustling crowds of Christmas shoppers. At this event however, 10% of all stallholders takings went to the PBC Foundation, so shoppers could stock up on festive goodies and raise money for us at the same time. We were delighted Linda Muir of County Durham sent us £25 in therefore, to receive a cheque in the post for £200 for sponsorship of our London marathon runners. Accompanying the donation was a lovely little which we send our sincere thanks. notecard depicting a picture of Saint George’s Church -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- -:- in Jesmond, Newcastle upon Tyne. The Foundation receives many little notecards with donations but Pupils Primary Example in Co Fermanagh this one has special meaning for Linda. The church Anne McMenamin, Secretary at St Josephs’ Primary is where Linda and her late husband Rob were School Ederney, Co. Fermanagh wrote a lovely married fifty years ago on St Patrick’s Day. On the letter to us recently. A long term member of the anniversary, Linda and her family enjoyed a get- PBC Foundation, she encouraged the children to together and lovely meal.
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