July 2016 – Volume 2 Issue 8
In this Newsletter:
10th Anniversary Conference
New, Accessible Website
Going for Gold – and Silver and Bronze
Support Group News
Research News
Fundraising News
Did you know?
The Pernicious Anaemia Society 10th Anniversary Conference – Book Now
You can now buy your tickets for the next Pernicious Anaemia Conference, which will take place on the revised date of 10 December 2016 at the Burlington Hotel in Birmingham.
Tickets cost £20 (members) £50 (non-members) and can be bought via the newly launched Pernicious Anaemia website.
Come along and hear from experts in the field of research and treatment of pernicious anaemia, find out about alternative treatment regimens and get advice on employment and education issues. It is also a great chance to meet other members and share experiences of coping with and living with Pernicious Anaemia.
Guest speakers already confirmed include: our ambassador, Dr. Chris Steele; Professor John Hunter, Lead Researcher, Gut Flora Research Programme; Professor Martin Warren who is working on the Vitamin B12/Anti-Pernicious Anaemia Factor project and on another new Project with Prof Hunter; Dr. Heidi Seage who is working on the Psychology of Pernicious Anaemia and Dr. Anne Guildford on new treatment methods. Also speaking will be Dr. Hajo Auwerda who is the founder of the B12 research and treatment institute in Rotterdam. Also confirmed to give us an update will be Dr. Nicola Ward who is leading the campaign to change the BNF Guidelines. A full list of speakers can be found on the website.
New Accessible Website
We are delighted to announce the arrival of our shiny new website. Up to date and mobile responsive (which means you can get to all the information you need on your phone or tablet much more easily than with the old website), it makes it easier for the society to react more quickly to the needs of our members.
The website also fulfills the requirements of the Charity Commission as it provides a comprehensive explanation of what Pernicious Anaemia for free in the library section, as well as free information to carers or relatives of patients with PA. More detailed information is available only to members.
There is also a new feature that allows medical professionals to contact the society using an online form.
Said Martin Hooper, Chair of the Society; “We are getting more and more enquiries from doctors and other professionals who are becoming more aware of the problems with the diagnosis and treatment of PA. Any medical professional who contacts the society is now given a comprehensive free update on the current problems with diagnosis and treatment.”
Going for Gold – and Silver and Bronze
With the launch of the new website, we have also been able to offer a revised, fairer membership choice to meet the differing needs of our members. Members can now choose gold, silver or bronze membership.
Bronze membership costs £20 for a year’s membership. Perfect for those who need to simply dip in to obtain the information they need to get the treatment they need, but have no further need of the society.
Silver membership costs £20 for the first year and then £10 every subsequent year. This means they can continue to receive the benefits of membership and keep up to date with developments, and support the charity as we seek to improve the diagnosis and treatment for all Pernicious Anaemia sufferers.
Gold membership offers a lifetime membership for £100. For this one-off payment, members also receive a signed copy of Martyn Hooper’s latest book and PA Society pens, window stickers and wristbands.
A Big Thank You to our Monthly Donators
We’d also like to thank all of those members who have set up a £1 or more monthly standing order. We are most grateful for your donations that have helped us to keep doing what we do and help those who are struggling with their condition. If you still haven’t signed up please consider doing so – you can download the Standing Order form from our website.
Research News
Jab Frequency Research: help still needed
The first phase of Prof Hunter’s Gut Flora research programme is coming to an end. However we still need five further participants who manage perfectly well on their three-monthly injections. If you are happy with your current treatment and live in the UK and have not enrolled for the programme please consider doing so.
We are also desperately trying to recruit a Control group for the project. Control participants do not need to have Pernicious Anaemia but will need to have had their serum B12 checked in the past year and recorded ‘normal’ results proved to be ‘normal’. If you have a member of family or a friend who has none of the symptoms of PA and has had his or her B12 levels checked in the past year please ask them to consider becoming part of the project. Please contact the office for more details or email ta****@pa***.uk
Accessible testing one step closer
Doctors will be able to doctor to download an app, attach a small ‘reader’ and take a pin prick blood sample to analyse the patient’s B12 status within minutes.
This will not only allow doctors to quickly and easily assess B12 status of the patient, which may remove one barrier to testing for a deficiency, but also it may remove the problem we have with different labs setting different levels for determining a deficiency. It still does not address the inadequacies of current blood tests for identifying B12 deficiency, but still an exciting development nonetheless.
In Brief
- A research programme that is investigating the cellular uptake of B12 has cleared the first two hurdles for funding. This will be a £4.2m research project undertaken with the society being an active partner along with three universities.
- We are in the early stages of a study examining the effect of B12 on neuron transmitters. Again it is early stages but we have two researchers from two UK Universities investigating the feasibility of this programme.
- In the autumn we hope to bring you news of an opportunity to fund a Master of Science student who will spend a year studying Pernicious Anaemia under the supervision of one of our Clinical Researchers.
Support Group News
We have three new support groups, one over the Menai Straits in Anglesey and two across the pond in America; one in Los Angeles and one in St Louis, Missouri. Our thanks to Kathleen McLeod (Anglesey and North Wales), Anna Skelsey (Los Angeles) and Shirley White-Ellul (St Louis).
Support groups are a great way of engaging with other sufferers, sharing information and ideas and reducing the feeling of isolation that so many feel when that have Pernicious Anaemia. Visit the Support Group page of our website to contact any of our support group co-ordinators and keep an eye on our website or social media channels to find out when they take place.
Interested in setting up a support group? The society is here to help, but how you run it, and how frequently run it is up to you. Co-ordinators run their groups independently, as frequently or infrequently as they wish.
We have a member prepared to start a group in Wells, Somerset if there is sufficient interest. If you live in Somerset and think you would benefit from attending please email lo****@pa***.uk.
If there isn’t a group near you and you don’t feel up to setting one up, why not join our on line community instead via our Health Unlocked forum.
Fundraising News
Lottery Fund application
We have submitted a funding application to the Big Lottery Fund to allow us to grow the society to meet the needs of our members. Stage one of the application to the Big Lottery has now been submitted and we should hear if we are eligible for a grant by the end of the Summer. A second, more detailed application will then be made.
GlaxoSmithKline Award
We are busy preparing our submission for a GlaxoSmithKline Impact Award ahead of their 21st September deadline. Every year they give up to ten awards of £30,000 to charities that can prove they are improving patients lives. We will be submitting our application with the knowledge that we were instrumental in bringing about the introduction of the new BCSH guidelines, which is already helping to improve the lives of those suffering with Pernicious Anaemia.
Did you know?
It has recently been reported that Mary Todd Lincoln, the wife of American president Abraham Lincoln had Pernicious Anaemia. Many theories have been put forward to explain the sometimes erratic behavior of the much-maligned first First Lady.
The latest theory has been put forward byDr. John G. Sotos, a cardiologist and technology executive who served as a medical and technical consultant on the TV show ‘House M.D.’ and was reported by History.com
Read more about this story on the blog of our Chair Martyn Hooper. You can also subscribe to his blog and receive updates directly in your email.
About us
The Pernicious Anaemia Society
Level 4,
Brackla House
Brackla Street
Bridgend
CF31 1BZ U.K.
in**@pa***.uk
+44(0)1656769717
Mon-Sa 8am-2pm
The Pernicious Anaemia Society is a company registered in England & Wales, number 07904047 and the United Kingdom’s Charity Commission, Registered Charity 1147839.