Christmas Message 2019

We really have had another fantastic year and would like to thank all of you for your support and involvement, not just in attending forums, completing surveys, organizing and taking part in fundraising events, but for your very kind and generous donations which we have received throughout the year.  

Surveys – once again this year you answered our call to take part in numerous surveys, your contribution to these surveys does make a difference, and this year especially with the survey for patients and carers we asked you to complete to help us formulate the responses for the SMC (Scottish Medicines Consortium) submission regarding the prescribing of Ruxolitinib (Jakavi) for PV patients in Scotland by NHS Scotland, we were very pleased with the positive decision from the SMC announced last week.  The submission was stronger because we included ‘your voice’, thank you.

Forums – we held 9 forums around the UK and Ireland in 2019 with nearly 1,000 people attending, a mixture of patients and family members.  We will be arranging the forums for 2020, including Galway in Southern Ireland, in the next couple of months and hope to see you at one or more of them.  We are very grateful to those of you who attended and of course to the medical teams who gave their time and support in attending and giving talks.

Living with MPNs Day 2019 – our 5th event took place on Saturday 16th November 2019 in London and was attended by nearly 200 people, plus an online audience of over 300 people from many countries around the world, which was amazing considering the time difference for some of you!  The day was a huge success thanks to your support in attending, either in person or watching on-line.  The videos of all the talks will be available on our YouTube channel in the New Year.

Fundraising and Donations – what another amazing year 2019 has been, once again we have been overwhelmed by the courage, energy and support that YOU all achieved through organizing and taking part in events and raising money and awareness.  And also, for the very generous donations we have received from so many of you.   We cannot thank you all enough for your support and generosity.  Donations to MPN Voice can be made here.

We are pleased to announce that our new fundraising co-ordinator is Michael Rodol, he is taking over from Vickie Peers who has been brilliant as our co-ordinator and also taking part in fundraising events herself, thank you Vickie for all your help and support.  If you would like to be part of the fundraising team as a regional organizer, or want to organize your own fundraising event you can contact Michael at fundraising@mpnvoice.org.uk

Trials and Research – MPN Voice continues to support clinical trials. 

The Measures study successfully enrolled 800 patients in over 20 centres in the UK, measuring symptoms pre and post treatment to demonstrate what happens to symptoms on ordinary treatments.

MOSAICC (epidemiology study) the next phase of this study will be launching in 2020 in centres across the UK and Ireland, with the aim of identifying factors that may cause MPNs in order to identify ways to prevent it.  The study has received funding from MPN Voice, you can support the study with a donation via the JustGiving page

Mithridate, a phase III, randomised, open-label, Multicenter International sTudy comparing ruxolitinib with either HydRoxycarbamIDe or interferon Alpha as first line ThErapy for high risk polycythaemia vera, will be launching in 2020. We will announce details for recruitment for trials once they are available.  MPN Voice is also supporting the MASCOT registry, a web-based registry of patients with MPNs associated with SVT (splanchnic vein thrombosis) a rare condition where veins in the abdomen become blocked, it will aim to gather much needed data to help understand, manage and treat this complication.

Trials and research studies benefit all of us with a MPN, if you want to take part in any trial or research study you can find out more here, or speak to your haematologist.  Details for trials can also be found at ClinicalTrials.Gov.

Buddy support – our buddies are fabulous people who have again throughout the year helped many many people with MPNs, not just the newly diagnosed, but others who have had their MPN for a while, and also partners/family members of someone who has a MPN.  We would like to thank all our buddies very much for the wonderful support they have given to others throughout 2019.  If you would like to become one of our buddies to offer support and help to other people please get in touch, and if you would like to have a buddy then email buddies@mpnvoice.org.uk.

HealthUnlocked – the online forum for people with MPNs, a place where you can ask questions; offer support; get comfort from other people; share coping strategies and lots more.  The MPN Voice community has 4,917 members and there are actually over 15,000 people affected by MPNs who visit the community each MONTH!!  This is from a global audience, including USA, Canada, Australia and many more countries.  If you are not yet part of the community you can join here, it’s free and anonymous, and monitored by the MPN Voice medical team to ensure accuracy and safety.  

Volunteers – we need YOU.  We are very busy here at MPN Voice and always need extra help, with admin, helping at forums, fundraising events.  If you are able to help in any way we would love to hear from you, please email info@mpnvoice.org.uk.

We are looking forward to another exciting year in 2020 and hope to see you at one, or more, of our patients’ forums or at a fundraising event.  

Thank you, all of you, for your continued support, without you we could not continue.

Merry Christmas and a Happy New Year to you and your families
from all of us at MPN Voice