May 2017 – Volume 2 Issue 11
In this Newsletter:
Let’s Get Together
A Patients’ Perspective
Let’s Get Together
We are starting to plan three Regional We are starting to plan three Regional Get-Togethers that will take place in the Autumn.
These informal gatherings will be held in London, Leeds and Edinburgh during the Autumn and will provide the opportunity for members and their families to meet others and exchange experiences of coping with living with Pernicious Anaemia. Dates and venues will be given in the next Newsletter.
If anyone from London, Leeds and Edinburgh would like to help organising these events please get in contact with us either by telephone or by email.
Support Group News
We have two new support groups, one in Worcester and one in Somerset.
The Worcester Support Group will meet on Saturday 6th May, 10.30 to 12.30am at Café H20 at the Wyche Cutting in Malvern.
The Wells group will meet at the Stable Block at the Old Deanery, Wells on Saturday, 10 June.
Visit the website to find details of other support groups and their meetings.
Your PA Experience
A team at Cardiff Metropolitan University has received approval for their research project ‘Receiving a diagnosis of pernicious anaemia: exploring experiences of relationships with health professionals.’
The project will look at the experience of patients in getting diagnosed and treated, and how health professionals view the disease. It’s being conducted by Dr Heidi Seage and Emily Glover at the Department of Applied Psychology, Cardiff Metropolitan University and will involve participants taking part in around an hour-long interview.
PA and Diet
The researchers who approached us last year to see if we were interested in being one of the autoimmune conditions included in a study to determine if diet affects their symptoms has received funding and will be going ahead.
The PA Society and one other Autoimmune Disease (probably Multiple Sclerosis) will now become active partners in the research project and we will be recruiting volunteer participants for the venture in the summer.
Click to find out more.
The patients’ perspective
Chair Martyn Hooper will give the patients’ perspective to attendees of the One Carbon Metabolism and Homocysteine conference which will take place at the University of Aarhus, Denmark in May.
The conference takes place over four days and Martyn will be giving a 25-minute presentation to give the delegates on how the problems with the diagnosing and treating Pernicious Anaemia is impacting on the everyday lives of patients.
Find out more about the conference here.
A big thank you to all the members who responded to our request to set up a monthly donation to the society
We do not currently receive any government funding and the security of regular donations will help us to continue to provide the support we know our members need.
The Annual General Meeting of the society will take place on Saturday June 3rd at the Burlington Hotel in Birmingham. The Trustees of the society will consider the Financial Report, the Chairman’s Report and Updating our Child Protection Policy, Vulnerable Adults Policy, Environmental Policy, Data Protection Policy and Welsh Language Policy as they are now due for renewal. The meeting will last from 10:30 until 11:30.
If you have a particular skill or knowledge and some spare time and believe you could help the society to meet the increasing demands of the society or could help the society grow you may like to consider becoming a Trustee of the society. For an informal chat please telephone the office on 01656 769717 between 8:30 and 12:30 on Tuesday, Wednesday, Thursday and Saturday.
Walking the West Highland Way
Good Luck to Rhona Bell who is walking the 154.5 km (96.0 mi) long West Highland Way to help raise funds for our new documentary which is currently being written.
The long-distance route runs from Milngavie north of Glasgow to Fort William in the Scottish Highlands and Rhona will be completing it in six consecutive days beginning on the 29 May.
Congratulations to our founder and Chair, Martyn Hooper, who was presented with an MBE by HRH, Prince William at Buckingham Palace earlier this month. Commenting on the award Martyn said: “It was a pleasure to raise the profile of the work of the society at such a prestigious event. I met a huge range of people, including captains of industry and the armed forces, all of whom were a bag of nerves to be in this position, but everyone was so supportive I feel very lucky to have been part of it.”