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 now been changed to that of Primary Myelofibrosis (MF) which is related to ET but follows a somewhat different path at a faster rate. It means that at some stage he will need a blood stem cell / bone marrow transplant.

With proper monitoring and treatment by Fionn's fantastic team at Guy's Hospital in London, together with support from the Charity MPNVoice, Fionn can carry on his life at University where he is completely in his element. Then, with the help of the transplant in due course, he can look forward to a full and healthy life as a former MF patient!

This area is undergoing a lot of research, including at Guy's where Fionn's consultant is one of the world's leading experts. But, as ever, this research needs ongoing funding. With the help of MPN Voice, I'm doing my best to support this.

For people needing stem cell transplants, it is also, of course, totally dependent on stem cell donors. So, apart from fundraising, my other goal is to raise awareness of the importance of stem cell donation. 

Unlike regular blood donation, and registering for organ donation, public awareness of blood stem cell donation is very low and, consequently, people requiring this treatment can wait a long time for a 'matching' donor, or fail to find one. The registration and donation process is very straightforward (stem cells are generally just collected from the donor's blood), and doesn't leave the donor compromised in any way. 

There is a global network of organisations that coordinate the registration and matching process; the best known in the UK are the Anthony Nolan Foundation and DKMS. PLEASE look them up and consider registering as a donor!

Here are the links:

https://www.anthonynolan.org/

https://www.dkms.org.uk/en

A contribution to my fundraising, and / or registration as a stem cell donor, would mean a lot to Fionn, me, our family and others with MPNs and MF who so look forward to a better understanding of how these conditions can be managed and (our aim) ultimately cured.

Thank you!