My wonderful 20 year old son - Fionn Kennedy - was diagnosed a few months ago with Essential Thrombocythaemia (ET) . This is a Myeloproliferative Neoplasm (MPN), a rare blood condition. His diagnosis has just been changed to that of Primary Myelofibrosis which is related to ET but follows a somewhat different path at a faster rate. Fionn's particular condition is caused by a rare acquired mutation to the Calreticulin gene (researchers identified CALR mutations in 2013).

With proper monitoring by Fionn's fantastic team at Guy's Hospital, along side support from the Charity MPNVoice, Fionn plans to carry on his life at University until the time comes for him to have a Stem Cell / Bone MarrowTransplant.  We do not yet know when this might be.

MPN Voice and Claire Harrison's team at Guy's/Thomas's not only give great support to people with MPNs, but are also doing all they can to research and investigate causes and treatments. But research needs funding and rare conditions like these don't attract as much attention as some others...

A donation from you would not only mean a lot to Fionn, me and our family but to others with MPNs who so look forward to a better understanding of how these conditions can be managed and (our aim) ultimately cured.

Whether or not you feel able to make a donation, Please can I urge you to consider registering as a Stem Cell Donor. This is extremely easy to do and involves simply posting a saliva sample to the registration sites (see  https://www.anthonynolan.org/ if you are under age 30yrs or https://www.dkms.org.uk/en for those up to age 55yrs). Donating your stem cells is most often entirely straight forward and as easy as donating blood - and doing so saves the lives of people like Fionn.

Thank you - this really does mean the world to me!