Hello everyone
2018 has been another amazing year for MPN Voice, and all because of your fantastic support.
Forums – we held 9 forums around the UK and Ireland in 2018 with a total of 883 people attending, a mixture of patients and family members, almost double the number of attendees in 2017! We had a delay in starting off the forums this year, with Belfast having to be cancelled in March because of the snow ‘The Beast from the East’ had us all snowed in, but we managed to rearrange it and held it in September with no disasters with the weather. We also held a forum in Dublin, the first for over 10 years, you can read a summary of the day here. mpnvoice.org.uk/documents/p...
We will be arranging the forums for 2019, including Cork 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 will take place sometime in November 2019, we don't have any details yet, it will be advertised as soon as we do.
Surveys – once again this year you answered our call to take part in numerous surveys, your contribution to these surveys does make a difference so thank you very much for taking the time to complete them.
Advocacy –the MPN Advocates Network (part of the Leukaemia Patient Advocates Foundation) is a network of MPN patient group representatives from around the world which was formed to create and maintain collaboration between patient groups. Our chairman, Jon Mathias, is also a member of the MPN Advocates Network steering committee, and in September 2018 he attended their global conference in Prague, along with delegates from around the world representing their patient organizations, including Maz from MPN Voice. The conference was also attended by many haematologists from around the world giving very informative talks covering updates on MPN research, current and emerging therapies, symptom management and more. You can view the presentation slides and videos from the conference here. mpn-advocates.net/mpn-horiz...
Fundraising and Donations – what another amazing year 2018 has been with all the events you have organized and taken part in, we are overwhelmed by the courage, energy and support that YOU all achieved through organizing and taking part in events, to making donations throughout the year, the funds you raise or donate are used to fund the work that we do to support the MPN community and also to fund research studies. We cannot thank you all enough for your support and generosity, you are all wonderful people.
Trials and Research – MPN Voice is currently supporting 4 clinical trials: MOSAICC; Mithridate; Measures; MPN Clot. 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.
mpnvoice.org.uk/about-mpns/...
We are also supporting the MyMPN patient registry to collect information over time from MPN patients, it is a digital hub for patients to record and anonymously share their unique MPN journey, the MyMPN registry was created by the MPN Research Foundation and will allow patients to connect with upcoming drug trials and research that will help to increase knowledge about MPNs. For more information about the registry, including how to join, click here.
mpnresearchfoundation.org/m...
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 2018. 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 a membership of just under 3,500 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 healthunlocked.com/mpnvoice 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 2019 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
