Excited to be Meeting UK MPN folks in London - MPN Voice

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Excited to be Meeting UK MPN folks in London

andrewschorr profile image
9 Replies

I am honored that MPN Voice is including me in the London July 24 meeting and I am excited to meet other folks with an MPN. I have primary myelofibrosis and have taken ruxolitinib for two and a half years. Remember, if you can't make it in person, we'll stream the video of most of the in-person program live and you can watch online. Plus we'll stream some interviews with clinical experts and inspiring patients and record even more. And then video clips will be available on patientpower.info/mpn and through MPN Voice, and we'll often alert you here too. See you in London, or from London, soon!

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andrewschorr
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9 Replies
JediReject profile image
JediReject

Hi Andrew, I'm sure you'll be a popular attendee, there can't be too many if any more 'qualified' patients than you with all the work you do for the MPN cause. . I would love to meet you in person for a chat about MF / Ruxo but unfortunately I cannot attend. However I may well be able to pick it up on-line. Keep up your good work on all our behalves. . .

Cheers JR

andrewschorr profile image
andrewschorr in reply to JediReject

Thanks! Best to you, happy to chat anytime

linds profile image
linds

Hello Andrew,

I will definitely be hoping to catch the forum online (I have registered). I also have

MF and have been taking Rux since last October. For me the drug has been a miracle and am so well, gardening for two or three hours whereas last year I could hardly do anything. Thankyou for coming to London, although Guy's is my hospital the clinic is only on the 4th floor so I can climb stairs - 29th floor just too much as I don't use lifts!

With best wishes

Linda x

andrewschorr profile image
andrewschorr in reply to linds

Glad you are doing well. My only concern is low platelets. See the doctor later today. See you online! Best to you.

Andrew

Really excited too. Be great to meet you and other patients. Really honoured to be part of the event and doing an interview.

I told Maz I am offering to help people with their make up if they want to look their best in front of the camera too!

Scottishterrier profile image
Scottishterrier in reply to

Hi my real name is Nicki I use Steven George in my memory of my brother who died at 50 who left 4 young children I was diagnosed with et jak2 which I am not sure that means but I to am helping Maz out at the Edinburgh forum on the 29th September I am doing buddy stand as I have been lucky to be matched up to a great buddy who now we are best of friends Jacqui and I have supported each other through really bad times and also helping Maz out with registration it feels good to support people who are in the same situation it is a great support network we have

Mazcd profile image
MazcdPartnerMPNVoice in reply to Scottishterrier

Hi Nicki, the forum is on Wed 30 Sep not 29th hope you are still ok to help me, looking forward to being there and seeing you and everyone else coming along. Maz x

steven-george profile image
steven-george in reply to Mazcd

i am looking forward to helping you out both with buddy stand and registration also listening to mira's speech in Edinburgh at the Western general hospital

andrewschorr profile image
andrewschorr

You go guy! Isn't it great to give back? Thanks for all you do!

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