It’s that time of year again for the round-up of the MPN Voice year, and once again it has been an amazing year, we started off the year with some uncertainty and trepidation about COVID and end it on a much more positive note.
With the easing of the COVID restrictions life was able to start going back to normal, with many wonderful in-person fundraising events taking place and some regional in-person patients’ forums, and we would like to thank you all for supporting MPN Voice by taking part in fundraising challenges and attending the forums and our international Living with MPNs Day in London in Nov. It was so lovely to be back amongst our MPN community and to see familiar and new faces.
Forums – the virtual online forums we held in 2021 due to the COVID pandemic proved to be very popular so we decided to continue with them, and during 2022 we held 5, with topics ranging from diagnostics to stem cell transplants, we are very grateful to all the haematology teams from around the UK and Ireland who supported these virtual forums. Each forum was live streamed and attended by a worldwide audience, and we thank everyone for joining us and hope that you will continue to join us as we hold more virtual forums in 2023, starting with one on Thu 12 Jan focussing on the menopause, HRT and MPNs, you can still register for this forum, details available here. All the virtual forums are recorded, the videos can be viewed on our YouTube channel.
As the COVID restrictions were eased we were able to start holding our regional in-person forums, and in May we were in Cork, the was the first in-person forum we had held since Dec 2019, the forum was very well attended with MPN patients, family and friends from across Ireland joining us, this forum was filmed, the video can be viewed here. Further in-person forums were held in Chester, Newcastle-upon-Tyne and Cardiff, we are currently planning forums for 2023 to be held around the UK and will be in Galway on Sat 24 Jun – more details to follow soon.
The 6th Living with MPNs Day held on Sat 5 Nov was an all-day hybrid event held in London, for MPN patients, their family and friends to attend in-person and online, 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, videos for each session can be viewed on our YouTube channel.
Donations and Fundraising – you supported us so amazingly by taking part in many and varied fundraising events, the Fundraising Team were truly inspired with all the different events which were a mix of virtual and in-person challenges, including the return of the GSTT abseil and the iconic London Marathon. We were also overwhelmed by the personal donations we have been receiving throughout the year, your kindness and generosity is absolutely amazing and we thank you all so much.
Surveys – once again this year you answered our call to take part in numerous surveys, including our MPN Voice Community Survey to help us set-up priorities for 2023, we wanted to understand what is important to you, and would like to thank everyone who took the time to answer the survey questions, we had 700+ responses, we can now focus on what is important to you.
Trials and Research – our commitment to support research and trials remains strong. MPN Voice continued to support many research projects, which includes: 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 following on from the successful pilot. We also funded research into COVID vaccination which was the first in the world to demonstrate MPN patients can form natural immunity to COVID and to demonstrate vaccine responses as well as the 1000 patient survey on vaccine outcomes, you can read the report here. In 2023 we are looking to support further research, bring news of new research and a revamp of our research pages on our website.
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.
Advocacy – this year, we have continued to represent MPN patients, particularly in the decision-making processes that determine whether new drugs are made available to NHS patients. Specifically, Jon Mathias and Andy Tattersall prepared a submission to NICE for Ruxolitinib for PV patients – we expect a decision on this in early 2023. A new interferon product called Besremi is also being appraised, initially by the SMC in Scotland, so we hope to have news on that front before long. We are enormously grateful to the patients who have helped us with these efforts – we are often told that patients’ experiences and opinions are key factors in the decision-making process, so please look out for announcements and requests for help over the coming year.
Buddy support – our buddies are fabulous people who have supported 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 2022. We also had a few new buddies join us, 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 please email firstname.lastname@example.org.
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 2022, taking the current membership to 8,954, with 12,239 posts to date! 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 pages and the Young People and MPNs blog – our presence on our social media pages continued to grow this year with daily posts keeping our MPN community updated, informed and engaged, you can find us on Facebook, Instagram, Twitter and LinkedIn.
The Young People and MPNs monthly blog, dedicated to young people living with MPNs, written by Alice, a 27 year old with ET, who each month shared her own personal experience and journey with ET, and her interviews with other young patients and clinicians, you can read all the blogs here. Alice will be writing more blogs in 2023.
Our new initiative in 2022 – Vlogcasts – a monthly series of informal conversations with Nona, co-chair of MPN Voice and a MPN patient herself. The video conversations are with MPN patients who talk about how they manage and live with their MPN, and healthcare professionals who talk about how they diagnose and treat their MPN patients in their clinics and support MPN Voice at the virtual and in-person forums. Details for all the vlogcasts recorded to date can be found here.
And finally, we bring you a video message from the MPN Voice Executive Committee – Jon Mathias, Nona Baker (co-chairs), Tim Ellis (chief finance officer) and Prof Claire Harrison (medical director) who all donned their best festive outfits to record this message of thanks to you all for the support you have given us during 2022. Click here to view video.
Merry Christmas and a Happy New Year to you and your families from all of us at MPN Voice