The MPN Voice Fundraising Team would like to say a huge THANK YOU to everyone who took part in fundraising events and made donations in 2023, and to all your amazing supporters for their generosity. There have been many inspirational fundraising events all with very moving stories behind the motivation to raise incredible funds for…
Hello everyone It’s that time of year again for the round-up of the MPN Voice year, and once again it has been an amazing and very busy year. Forums, in-person and virtual online – the in-person forum calendar was full this year, with 7 forums in Galway, Nottingham, Inverness, Llandudno, Newcastle-upon-Tyne, Leeds and Edinburgh, all…
The 7th Living with MPNs Day, hosted by MPN Voice, was an all-day event held in London, for MPN patients, their family and friends to hear the latest news on trials and treatments from leading experts in the field of MPNs, from the UK, Europe and the USA, specialist haematology nurses and MPN patients. This was…
In Conversation With … Gabor Posta, who talks to Nona about being diagnosed with ET when he was aged 17, and then with PV about 5 years later and how this had an impact on him as he was so young, particularly with regards to his career choice. Gabor tells Nona that he takes Aspirin…
An extra vlocgast this month with Nona and Orlando talking about the MyMPNVoice App which has been developed in partnership with Sanius Health. The My MPN Voice App is designed to allow people living with MPNs to be able to capture their quality of life (QoL) data on a daily, weekly or monthly basis, to…
As a young person living with an MPN I hope that my story will provide comfort to other young people with MPNs to know that they are not alone and there is support out there for them. MPN Voice is very close to my heart as I was diagnosed with Essential Thrombocythemia in September…
“My Mum is my inspiration. I feel helpless watching her struggle with her condition and realised fundraising was my way of supporting the vital research required to find potential cures for her and others like her”. My name is Heidi Rose. I am 31 years old and so far I have raised more than £6,000…
“My wife’s illness inspired me to become a fundraiser myself, it is not something I have ever done before, but I would definitely do it again.” My wife Annette was diagnosed with Polycythaemia Vera, more than fifteen years ago so I was keen to support the charity and the work they do to make…
In Conversation With … Paul Goode, who talks to Nona about his PV and how it was diagnosed in March 2020. Paul tells Nona that in 2019 he was experiencing itchy skin, he searched the internet for some answers and made some changes to products he was using, but nothing helped. He then received an…
The video of the MPN Voice patients’ virtual forum, held on Thursday 19 October 2023, is now available to view. This online forum focussing on Young People and MPNs features talks from: Prof Claire Harrison, Guy’s & St Thomas’ NHS FT; Dr Anna Godfrey, Cambridge University Hospitals NHS FT; Dr Jonathan Lambert, University College London…