Hello everyone
It’s that time of year again for the round-up of the MPN Voice year, and what a year it has been for us all!
COVID-19 continued to challenge everyone, and our wonderful MPN Community certainly embraced these challenges, and we would like to thank you all for your support.
Forums – we were hoping to be able to hold some in-person forums this year, but unfortunately due to the uncertainty surrounding restrictions, we decided to hold all forums online so that we could continue to provide support and information, particularly with regards to COVID. We held 6 forums with support from haematology teams from around the UK and Ireland and we thank them all for their support. The forums were very well attended by a worldwide audience, and we thank you all for joining us. Videos of all the forums can be viewed on our YouTube channel. youtube.com/channel/UC-S_Ic...
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. 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, your contribution to these surveys does make a difference, even more so this year in assessing the impact of COVID-19 on MPN patients and responses to the vaccines, these survey findings were reported to health and government bodies and other patient organizations, not just in the UK, but worldwide, making a vital contribution to understanding the impact of this virus and vaccine response in people with MPNs.
Trials and Research – MPN Voice continued to support clinical trials during 2021. Our commitment to support research and trials remains strong. 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/..., or speak to your haematologist. Details for trials can also be found at ClinicalTrials.Gov clinicaltrials.gov/ct2/home
Specifically MPN Voice is supporting MASCOT which is 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, MOSAICC which is a large epidemiology study following on from the successful pilot. In addition we have 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… watch this space for more exciting research information which will come next year.
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 2021, particularly with ongoing uncertainty with COVID which continued to have a huge emotional impact on MPN patients, and having a buddy to talk to has helped so much. 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 buddies@mpnvoice.org.uk.
Podcasts – these relaxation podcasts were produced for people with MPNs by Paul, who is a psychologist and hypnotherapist and also a MPN patient, diagnosed with Myelofibrosis (MF), to help them learn to be happier and healthier and more positive about living with a MPN. The podcasts were very popular once again this year, total downloads to date are 2,371. We are very grateful to Paul for producing them and supplying them for free to all MPN patients. You can access and download them here mpnvoice.podbean.com/
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 2021, taking the current membership to 7,701, with 10,373 posts to date! This is from a global audience, including USA, Canada, Australia and many more countries.
Our new initiatives in 2021 - social media pages and the young people and MPNs blog Our social media presence on Facebook, Twitter and our new Instagram page has increased thanks to Mark Taylor, who has totally re-vamped our community Facebook page and started our Instagram page. Mark has been posting daily on both pages, to inform, engage and support our MPN community, and the feedback from you has been extremely positive, you can find us on Facebook facebook.com/MPNVoice, Twitter twitter.com/MPNVoice @MPNVoice and Instagram instagram.com/mpnvoice/ @mpnvoice.
The young people and MPNs monthly blog, dedicated to young people living with MPNs, written by Alice, a 26 year old with ET, she has shared her own personal experience and journey with ET, future blogs will include interviews with other young patients and clinicians. The new blog is: in conversation with Prof Claire Harrison, who talks about diagnosing and treating young MPN patients, you can read this and previous blogs here mpnvoice.org.uk/about-us/yo...
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 2021. Click here to view video youtu.be/ZqGsbrEWab4 (you will be redirected to the MPN Voice YouTube channel).
Merry Christmas and a Happy New Year to you and your families from all of us at MPN Voice
