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Parliamentary Lobby a Resounding Success

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Parliamentary Lobby a Resounding Success S P E C I A L P O I N T S Cobalamin News O F I N T E R - VOLUME 1, ISSUE8 NOVEMBER 2009 EST: Early Day Motion signed by 79 MPs Parliamentary Lobby A Resounding Success Over thirty members After months of planning and toms, Diagnosis and Treatment Many agreed there and then to sign made their intense networking within of the condition” said Chairman the Early Day Motion that had re- way to Lon- Westminster the Society‟s Par- of the Society Martyn Hooper. cently been tabled by Bristol MP don to attend liamentary Reception took place Doug Naysmith. the event. Members of the society also on October 28th. attended the event with several We were looking forward to re- Seventeen Held in The Jubilee Room in the staying in London for two ceiving ten and maybe fifteen signa- members House of Commons the Recep- nights. Around thirty of our tures on the Early Day Motion that from all par- tion began at 9.00 a.m. and al- members called for an urgent Review of the ties asked for more infor- most as soon as the doors attended Diagnosis and Treatment of Perni- mation about opened the first M.P. who had and many cious Anaemia. At the time of going the problems been asked used the to press over 80 members had sup- faced by our to attend by event to ported the call for a Review to take members. one of his meet place. constituents The Event was recorded other The Early Day Motion has been (and our mem- kept open and so it is still not too member) bers of the society to exchange Martyn makes his point late to write to your MP (if you I N S I D E approached stories and experiences. haven‟t already done so) and ask THIS ISSUE: the Chairman of this society A total of seventeen MPs at- him or her to support the motion asking what the whole event tended and it was reassuring to by signing it. Merchandise 2 was about. note that members from all now on sale. The society would like to say a “For two hours it was non-stop political parties were genuinely special thanks to Madeleine Moon Virgin Lon- 2 explaining to MPs the problems surprised at the way in which MP and Mary Southcott for their don Mara- that we sufferers of Pernicious Pernicious Anaemia is diagnosed hard work and support in making thon Place Anaemia relating to the Symp- (or undiagnosed /misdiagnosed). the reception a resounding success. available New Petition 2 Private Cinema Screening - Photoshoot Welsh As- When Mairi Sutherland was diag- 3 any medication whatsoever her Mairi has organized a Private sembly Re- nosed with Pernicious Anaemia condition deteriorated and she Screening of her latest film. Just ception she thought that all the problems struggled to complete the most fifty tickets are available at £15 associated with the disease would Research 3 basic day-to-day living tasks. each. The Screening will take place fade away. Unfortunately this News “I own my own film and production at the Empire cinema in Leicester didn‟t happen. She didn‟t receive company and I was really having Square, any loading doses and was pre- New Diag- 4 problems directing my latest film London on scribed an injection of Hy- nostic Test Photoshoot. I had to hand over to the Thursday droxocobalamin every three Assistant Director in the after- 26th No- Helping us 4 months. Like many of us on that noons” says Mairi. “When I discov- vember. Help You treatment regime she struggled ered the website of the PA Society I The show and her requests for more fre- realised I was being badly treated starts at quent injections was, as is usual, and was immediately put back on 6.30 pm. Tickets are available turned down. When she was the injections by another doctor”. online or by telephoning the office. told that she no longer needed Please support this unique event. © The Pernicious Anaemia Society 2009. Reg. Charity No. 1115195 P A G E 2 New Merchandise Available Just in time for the Christmas New for Help to Festivities we can now offer 2010 these raise diaries awareness readers the opportunity to pur- “The growing come com- of the chase some of our newly avail- plete with a society able merchandise. selection of gifts presenta- using our tion gift car win- box and a dow stickers. They sit inside the are perfect for pen that is window and show our telephone held in the number and website address. Christmas and spine of the Just £1 each or 10 for £5 diary. They have a week per two other special page and have a quotation form notable celebrities from past and These occasions” present. The cost just £4.99 beautifully Kirsty and Abigail model the crafted and new Polo-shirts - Just £10. S, Our ever- engraved M, L and X L in Black or White. popular pens make wrist- writing a All merchandise can be ordered bands - £1 real pleasure. They come with by post or email each or 5 gold gift box and cost just £4.49 [email protected] for £3 Virgin London Marathon We have been allocated a looking for a place in the 2010 raise at least £345 to cover running entry for the 2010 the cost of the entry. Virgin London Marathon. The society will offer adminis- Following an administrative trative support and publicise error we were unable to the details on our website. enter last year and our entry We will also provide a run- was allocated to another ning vest with our logo and charity. We Have An Entry Marathon please ask him or any other support that the for the Virgin Lon- Earlier this year we paid £345 her to contact us. runner feels he or she needs. to the London Marathon to don Marathon 2010 Obviously the runner would And of course our entrant ensure that our place was still will receive all our members‟ available. be competing on behalf of the society and would need to support! If you know of anyone who is New Telephone Help-Line Launched A new dedi- Following on from a success- caller‟s contact details will be cated tele- ful pilot scheme that the soci- taken and Jane will „phone the phone ety ran last year, a new dedi- caller back usually within an helpline has cated telephone help-line has hour. If nobody is available been set- been set up. then the caller can leave a up. The service, which is only message and Jane will call available to members, has a The Helpline is manned by back as soon as she can. dedicated telephone number - Jane, our specialist nurse We receive an average of 01656 724810 within the U.K. counselor. If Jane is unavail- three calls a week about a and 441656724810 from out- able when anyone calls (which wide range of subjects - but side the U.K. is most likely as she is a busy most are about the treatment Community Nurse, the regime used to treat PA. COBALAMIN NEWS © The Pernicious Anaemia Society 2009. Reg. Charity No. 1115195 VOLUME 1, ISSUE8 P A G E 3 Invitation to Welsh Assembly Reception Following on from the successful event. tion of public responsibility is aware Westminster Reception the society An even of the unnecessary suffering that is is hosting another such event at the better being experienced by our members Welsh Assembly Buildings in Cardiff, arrange- because of an antiquated diagnostic “If you live in U.K. in Conference Room 24 on the ment process and old-fashioned treatment 25th November starting at 12 noon would regime. Wales please and ending at 1.30. be for our Welsh members to At the same time as the Reception join us or All Welsh Assembly Members (or request a meeting with their AMs is being held, two Assembly Mem- AMs as they are known) have been at the Reception. bers have signed a Statement of write to invited to attend the Reception If you live outside Wales but have Opinion calling for an urgent review you’re A.M. where they will be made aware of relatives who reside in the Princi- of the diagnosis and treatment of the problems faced by sufferers of pality you might like to ask them Pernicious Anaemia. We need you Pernicious Anaemia. We appeal to to write to their AM or arrange to If you need help in identifying and to get all of our Welsh members to write meet their representative at the contacting your AM please contact to their AMs (there will be more event. the office so we can help. Contact involved” than just one AM per constituency) It‟s vital that everyone in a posi- details are on the back page. and ask him or her to attend the Research into Genetics of PA & MMA/Homocysteine Volunteers are wanted to partici- just a few weeks. garding this), the reasons why the pate in a Research Programme You will be asked to present your- patient still experiences all the being conducted by Prof. J. Hunter self to Prof. Hunter at the site in symptoms of P.A. is because of ab- at Cranfield University near Bed- Bedford where your levels of Ho- normal levels of Homocysteine or ford, U.K. mocysteine will be checked. As M.M.A. Prof. Hunter is looking for pa- well as the Homocysteine level, The society may be able to pay your tients who have been clearly diag- the Professor will also check the travel expenses and even arrange nosed as having Pernicious Anae- amount of Methylmalonic Acid in transport.
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