living with MPNs day in London

[MFBMT2011]

Anyone going to the Living with MPNs day on Saturday 18th Nov? I am. It’s nice to put faces to names and nice to chat. I will be heading for the Myelofibrosis group but am happy to chat to anyone. 😀

I organised a wear/carry something red several years ago so people could meet and carried a red folder under my arm. . However, without thinking, I put on a red and white polo shirt. A lady named Celia Bass marched up to me and said quite firmly”Are you Chris Harper?” When I responded “yes” she said “If you had told us you would be wearing a Where’s Wally top it would have been easier to find you!”

We’re still friends! 😀

[StreetPastor]

Hi there,

Too far for me as I live in Mid Wales. I have an MF diagnosis and take Ruxolitinib. To cut a long story short it turned back the clock and a bone marrow biopsy showed my results as ET!!! (level 2 seem to remember).

I’d love everyone to know, but the experts seem to have missed this somehow. It’s BIG for me anyway 😃🙏🏻🙌🏻

Have fun!!

[Spanelmad]

Didn't know there was one.Where in London ?

[Spanelmad in reply to Spanelmad]

Found my answer

[artydutch]

I will be going as well and also will join the MF group. I have nothing in Red though…..

[Exeter21]

Yes I will be there travelling up from Devon. Pity no name tags & area to wear . Julia 👍

[Rupy]

Hi Chris, I have myelofibrosis and will be going also. This is my first time and am looking forward to meeting others. I’m a 74 year old woman and was diagnosed in 2020.

[Rupy]

Hi all, I can’t seem to find the info on the MPN day in London on the 18th. Could someone kindly send me the venue address and the opening time. Thanks a million.

[Mazcd Partner MPNVoice in reply to Rupy]

hi Rupy here are the details: The venue for attending in-person is: The Cavendish Conference Centre, 22 Duchess Mews, London, W1G 9DT.

Timings: Registration from 09.00 am. Start time: 09.20 am. Close at 16:00 (4 pm).

Best wishes, Maz

[Rupy in reply to Mazcd]

Thanks so much

[MFBMT2011 in reply to Rupy]

Hi Rupy. Nine from this forum have said they are coming. Three in the Myelofibrosis group, 5 ET and one unclassified. I will be wearing a red or red/white polo shirt if you want to say hello. Chris

[MFBMT2011 in reply to Rupy]

Did you make it here? Chris

[MFBMT2011]

it will be nice to meet you all. Hope you are booked in, as tickets ran out ages ago and there was a waiting list for cancellations.

Chris

[Otterfield]

I wish I could but I am still advised not to mix - the train journey would be den of bugs! It's a shame as I would love to meet my HealthUnlocked friends.

[Mazcd Partner MPNVoice]

Hi all, if you can't find Chris, come and find me and I will direct you to him, you will find me easily enough in the crowd, just look for my blue hair.

Looking forward to seeing you all there. Best wishes, Maz

[Sodabread]

Hi Chris - yes we will be there at the meeting - also in Myeleofibrosis area. Look forward to speaking to you again. Pauline and Ray Bassett

[MFBMT2011 in reply to Sodabread]

It will be good to catch up!

[VeselinaILIEVA]

Hell. I would like to talk to you if possible. I am from Bulagaria. My mother age 56 was recently diagnosed with myelofibrosis. We are new in this battle and your advice will be much needed.