“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…
MPN Voice is producing a recipe book designed by and for MPN patients and we need your help! Background Diet is so important in contributing to a healthy lifestyle – we all know that we are what we eat. However, emerging research is looking at the relationship between nutrition and MPNs, and the potential benefits…
Your fundraising event can be small or big, as all fundraising adds up to make a huge difference for all of us with our rare blood cancers, myeloproliferative neoplasms (MPNs). If you don’t want to participate in a fundraising event organized by MPN Voice, you can still do your own thing! If you would like…
HealthUnlocked is a social network for health. By finding others with similar health backgrounds people can take on day to day health concerns together. And because the communities are set up by leading health organisations people have access to credible support. The founders believe good health information is good for your health. HealthUnlocked has been…
17 March 2016 “Hello, my name is Helen Bass and I live in Hertford with my partner. Having played tennis and football at county level for many years, I then turned to running and crossfit training as a means of keeping fit. I like a challenge so I entered the ballot for the London Marathon,…
Led by Jon Mathias, co-chairperson for MPN Voice and Caroline Thomas an ET patient, we have been looking at ways to best represent patients affected by myeloproliferative neoplasms (MPNs) Advocacy means speaking on behalf of someone or something and in this case, we’re saying that one of MPN Voice’s roles, as our name suggests, is…
15 March 2016 “After my fiancé Lauren was diagnosed with Essential Thrombocythaemia in January 2014 at the age of 28, she went to MPN Voice for support and guidance. I was amazed and humbled by the support she received from you forums, especially after attending a patient group forum in London last year.She has struggled…
15 March 2016 “Hello, my name is James and I live in Winchester with my beautiful wife Sarah, who is just about to have our first baby….. middle of April!!! So no pressure then!!! I’m either going to be running on Sunday 24th April really fast, because our baby is late and just in case……
15 March 2016 The 2015 Virgin London Marathon weekend was poignant for me, I spent most of the weekend reading the information about ET on the MPN Voice website, I had suffered two mini-strokes in quick succession at the age of 30. I was diagnosed with Essential Thrombocythaemia. I was reading up on my impending…