A good friend, 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 MPN Voice, Fionn plans to carry on his life at University until the time comes for him to have a Stem Cell / Bone Marrow Transplant. 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...

On 30th September and 1st October 2017, Faye will be joining a small group of cyclists and walkers - as a walker - to tackle the South Downs Way. The cyclists will do the full 100 miles of rough tracks, fields, puddles, cowpats, nettles and who-knows-what-weather, with an overnight stop in Amberley - the mid-way point. Meanwhile, the walkers will set off a day's walk from Amberley and retrace their steps the next day.

As he is only 11, Tom has chosen a different challenge. Fionn is 20 years old: Tom has set himself the goal of swimming 20 miles in one week. 20 miles works out at 32km / 32,187 meters - or 1,288 lengths of a 25m pool. Tom already swims 4-5x a week with his swim club; this challenge will be in addition to his normal swim training and will take place during his one week off from training in October half term. We know he'd love a break from the pool but we also know he wants to do what he can to help Fionn. In Tom's words, "Although I don't know much about this disease, Fionn is a good friend and we always have good fun together. I want to raise money to help Fionn and others like him. I am sure he would do the same for me".

A donation from you would not only mean a lot to Fionn, 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