Can you C Us Campaign

[jillydabrat]

Hi everyone, sorry but just found out that the parliamentary launch is not going to be televised. I don’t know if I will be able to record it via zoom but I will try for you guys xx

[Mazcd Partner MPNVoice]

Hi Jilly, Cancer52 are hoping to have the Do You C Us? campaign website up and running sometime tomorrow which features a campaign video of people with rare and less common cancers, as well as longer ones of people telling their stories in more detail.

Maz

[jillydabrat in reply to Mazcd]

Right, I didn’t know the date for the release, just the parliamentary launch so thanks Maz x

[Bridie123 in reply to Mazcd]

I would like to say that to MPN voice. I went to fill in the survey for, how does living with an MPN affect you, but it didn't include ET!

[Mazcd Partner MPNVoice in reply to Bridie123]

Hi Bridie123, you are referring to the Landmark 2:0 survey which is being conducted by a market research company on behalf of a pharmaceutical company.

As you may be aware, this is the 2nd Landmark survey, which is being conducted worldwide, the 1st Landmark survey was conducted, again worldwide, in 2016 and did include all three MPNs, ET, PV and MF, the results of the UK arm of the study were published in the BMJ in 2019.

The Landmark 2.0 survey is now following on from the Landmark 1.0, to obtain even more insights into MPNs, and the reason that ET has not been included this time is because there were larger gaps in the reported data for PV and MF than there were for ET, and the main objectives for Landmark 2.0 are to gain more insights and explore more fully these gaps in reported symptom burden, quality of life and on-going management.

Best wishes, Maz

[Bridie123 in reply to Mazcd]

Thank you Maz for enlightening me. I was feeling aggrieved 😉

[jillydabrat in reply to Mazcd]

I just read my story on their website. I am really disappointed that they cut out the bit about all the support I got from MPN Voice. Considering the launch today targeted the issue of supporting websites and charities of these lesser known charities I feel let down that my statement about finding MPN Voice after I had Googled some terrible sites had been scrubbed. I told them that if it wasn’t for everyone on here I wouldn’t have known what to do but they cut it out. So sorry guys 😣

[Mazcd Partner MPNVoice in reply to jillydabrat]

Hi Jilly, they have said they will be adding the longer videos of people telling their stories onto the website soon, so perhaps it will still be in your video. Thank you so much for being an advocate for MPNers, well done, Maz x

[jillydabrat in reply to Mazcd]

I hope so Maz, even if they added it to the written story part. Without this place I would have been lost. I Googled so many awful sites before finding everyone here. There was no way I was not going to advocate MON Voice.

[azaelea]

Thanks for letting us know the situation. I was ready with the Parliamentary Chanel 612 for 2.15 pm tomorrow. Do hope you can manage to record your Zoom call. Will also try and get Do You C Us website as Maz has mentioned. Good luck!! You’re amazing….well done! xxFran

[JediReject]

Thanks Jill , , , Bet you had your hair done too this time 😃 , , hopefully we'll get a chance to see it one way or another. Good Luck !!

Chris x

[jillydabrat in reply to JediReject]

Well it’s still super short but the Flickr bits have been cut off lol. Really nervous. You can read my story on the cancer52 website as if today. X

[JediReject in reply to jillydabrat]

Take a few deep breaths and a couple of Mindfulness exercises if you know any. . I will take a look at that later ta just away to my agéd Fathers to do a few wee jobs whilst my good lady makes sure his main living areas are clean and tidy. Trying to keep him independent for as long as possible as he's struggling along on worn out hips. . . . .

[harleydavidson]

Good luck xx