In Conversation With … Annette Matthews, who talks to Nona about her MPN journey, from ET to MF to having a stem cell transplant (SCT) in 2017 and life beyond. Annette tells Nona that once she was told about her transformation she went on a trial for a new drug, which initially did help but…
The month of May featured International Nurses’ Day – a celebration of the contributions and sacrifices made by nurses in the UK and around the world. Nurses’ Day is also an opportunity to raise awareness about the vital work nurses carry out on a daily basis, which is why I am delighted to be joined…
In Conversation With … Dr Arvind Pillai, Consultant Haematologist, The Countess of Chester Hospital, who talks to Nona about Interferon. Nona starts by asking Dr Pillai what it is and how effective it is for treating MPNs. Dr Pillai explains that Interferon used as a treatment, is a manmade copy of the interferon which is…
Recently the National Institute for Health and Care Excellence (NICE) completed their appraisal of Ruxolitinib (Jakavi) for the treatment of Polycythaemia Vera (PV). MPN Voice contributed to the process with a written submission and we were strongly represented at the committee meeting by a PV patient who has benefitted from the treatment. However, NICE have…
This online forum focussed on Genetics and MPNs. The talks were presented by: Dr Andrew McGregor, Newcastle NHS FT, Dr Jon Lambert, University College London Hospitals NHS FT and Dr Anna Godfrey, Cambridge University Hospitals, NHS FT. Programme Welcome and introduction to MPN Voice – Maz Campbell-Drew, Administrator MPN Voice Introduction to genetics – Dr…
A very special interview with Nona Baker Co-Chair of MPN Voice and Professor Claire Harrison. In this interview Professor Claire Harrison shares breaking news with up-to-date results from the MAJIC PV Study. Following a recent media article it also clarifies and reassures the importance of existing, very successful therapies such as Hydroxycarbamide and Interferons, which…
Last month, Charlotte, Jamie, and Brad ran the London Marathon in support of MPN Voice. These three amazing runners raised more than £8,000 and if you scroll back through the charity’s recent social media posts, you’ll see photos of each of them proudly wearing their medals over MPN Voice t-shirts. This incredible feat is just…
In Conversation With … Alisia O’Sullivan, ET patient and MPN Voice volunteer, who talks to Nona about her ET and being involved with MPN Voice. Alisia was diagnosed with ET 15 years ago, she tells Nona how her diagnosis came about, she was going to give blood and almost missed going and was very glad…
In Conversation With … Prof Lesley Anderson, Chair in Health Data Science, Aberdeen Centre for Health Data Science and Chief Investigator for the MOSAICC Epidemiology Study, who talks to Nona about how the study started and how she became involved. Lesley tells Nona that the study started as part of her study portfolio when working…
This online forum focussed on updates and latest research in MPNs from the ASH (American Society of Hematology) annual meeting held in Dec 2022. The talks were presented by: Professor Claire Harrison, Guy’s & St Thomas’ Hospital, London and Professor Adam Mead, University of Oxford. About ASH – with more than 18,000 members from nearly…