Hello everyone
It’s that time of year again for the round-up of the MPN Voice year. We have had a very busy and successful 2024 and want to thank you all for your amazing support.
The My MPN Voice App – the only MPN app you’ll ever need! Launched earlier this year, the app will allow you to track your MPN symptoms, capture your quality-of-life data, engage with your own health data in a different way and communicate and share this data with your own healthcare teams. You can also access MPN Voice news and updates, connect with our community. You can learn more about the app here.
Forums – the in-person and virtual online forums continue to be a success. It has been a pleasure to see familiar faces and meet so many new MPN patients and their family members at the in-person forums in: Oxford; Cambridge; Belfast; Dublin; Nottingham; Dundee; Liverpool; Newcastle-upon-Tyne; Leeds; Cardiff; Glasgow. We held 5 virtual online forums focussing on a variety of topics, with each forum attracting a global audience, these forums are live streamed, recorded and uploaded to our YouTube channel to be viewed at any time. We will announce details for forums in 2025 once they are confirmed.
The 8th Living with MPNs Day held on Sat 16th November was well attended, both in-person and online, allowing MPN patients, their family and friends to hear the latest news about trials and research; the My MPN Voice app; and ways to look after yourself. The videos for each session can be viewed on our YouTube channel.
Donations and Fundraising – your kindness and generosity this year has been truly amazing, you have supported us so generously with donations and taking part in fundraising events, the Fundraising Team were in awe of the variety of events. Your kindness and generosity is wonderful, and we thank you all so very much. If you would like to make a donation to show your support, please visit our JustGiving page.
Trials and Research – our commitment to support research and trials remains strong. MPN Voice continued to support many research projects, including: the MASCOT study, a registry and coagulation based study for MPN patients with a large clot affecting their liver; MITHRIDATE which is a first line study for 596 patients with PV; and MOSAICC which is a large epidemiology study. Many HCPs have benefited this year from ‘Fiona’s Fund’ set-up from a legacy from a grateful patient, to support the educational needs of clinical staff, prioritising nurses, pharmacists, psychologists and allied health professionals.
Trials and research studies benefit all of us with a MPN, if you would like to take part in a trial or a research study, please speak to your haematology team.
Advocacy – the Advocacy Team continued their vital contribution to submissions to NICE, the SMC and the NCPE, with successful outcomes for the prescribing of Fedratinib, Momelotinib and Besremi. The work that the volunteers on our Advocacy Team do is a key part of submissions, but this work also relies on very valuable input from the whole MPN community, through responses to surveys and questionnaires and above all through fundraising to help us continue our work.
We continue to collaborate with other patient groups around the world through our membership of the MPN Advocates Network. Our website, printed leaflets and social media activities are often used to help patients in less developed countries establish their own patient groups. You can hear more about the MPN Advocates Network in the vlogcast Nona recorded with the Steering Committee members of the MPN AN.
The vibrant community we have created around MPN Voice is seen as a model and we look forward to making more international connections in the future. One very exciting collaboration with two patient organizations based in France and Spain will be an online webinar for parents of children and adolescents with a MPN, which will be broadcast in English, French and Spanish. We will be announcing details for this webinar very soon, watch this space!
Buddy support – our buddies are fabulous people who have supported 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 2024. Being a buddy is very rewarding, if you would like to become one of our buddies to offer support and help to other people, or if you would like to have a buddy for support, please get in touch at buddies@mpnvoice.org.uk.
HealthUnlocked – the online forum for people with MPNs, where you can ask questions; offer support; get comfort from other people; share coping strategies and lots more, the forum is monitored daily by the MPN Voice admin and medical team to ensure accuracy and safety of information being exchanged. The MPN Voice community continued to grow during 2024, taking the current membership to 10,943. 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.
Social media and monthly vlogcasts – our presence on our social media continued to grow this year with daily posts keeping our MPN community updated, informed and engaged, you can find us on Facebook, Instagram, X (formerly Twitter) and LinkedIn.
Nona, co-chair of MPN Voice and a MPN patient herself, continued her monthly vlogcast series of informal conversations with MPN patients and healthcare professionals, the vlogcasts can be viewed here.
The Young Patient Network for people with a MPN aged 40 and under – to bring together and support young people with MPNs, a welcoming space where young patients can meet and connect with like-minded others, and receive information tailored to young patient experiences and challenges. The network emerged out of a recognition that being diagnosed with a MPN when you’re young can bring with it a unique set of questions, issues and concerns. If you’d like to be part of the Young Patient Network group on Facebook, you can request to join by clicking this link.
All the team at MPN Voice are very grateful for your wonderful support, we really could not do this without you, and we are looking forward to 2025 and all the exciting ways that MPN Voice will continue to grow and evolve.
Please click here to view a card of warm wishes and thanks from the Executive Committee to all our supporters, volunteers, and the entire MPN community.
Merry Christmas, Seasons Greetings, Happy Holidays and a Happy New Year to you and your families
from all of us at MPN Voice
