Zack Pemberton-Whiteley (he/him)

#PatientEngagement, #PatientAdvocacy, evidence, questions, perspective, gifs, collaboration & @PGtips. Views my own, repost ≠ endorsement

[Martin Lewis @MartinSLewis]

If you donate to charity, why saying yes to Gift Aid means they get more & you may get more too.

Feel free to share, charities miss out on hundreds of millions of unclaimed Gift Aid each year.

[Zack Pemberton-Whiteley (he/him) @ZPWHITELEY]

@RoryStewartUK Very insightful Rory… @campbellclaret would approve

[Remembering Ruby @KindlyLoudly]

Why does cancer evoke so much talk of conflict?

Ruby was a lover not a fighter. A dyed in the wool pacifist who avoided all forms of conflict.

She was the child in the kindergarten playground trying to broker a peace-deal between friends who had fallen out.

🧵1/n

[Ryan Riley @RyanRileyy]

Let's talk through the @LifeKitchen x @holland_barrett collection.

The WORLDS FIRST taste-enhancing food range for people living with taste loss whether that be from cancer, covid, old age or anything else!

Can we share to get it to the people who may need it?

[Zack Pemberton-Whiteley (he/him) @ZPWHITELEY]

Wedding day - 29.12.23

[Zack Pemberton-Whiteley (he/him) @ZPWHITELEY]

What a lovely surprise I had just now... instead of a ‘1:1 catch up call’, a chance to connect and say au revoir (but not goodbye) to #PatientAdvocacy colleagues. Thank you to everyone who joined or sent a Kudo message, and to @SamanthaNier for organising ❤️

[Zack Pemberton-Whiteley (he/him) @ZPWHITELEY]

End of an era… Zack out (🎤 drop)

[The ICR @ICR_London]

👩‍🔬@Torr_Bethany, Scientific Programme Manager in the ICR's Translational Genetics Team, discusses the #BRCA-DIRECT study at #ESMO23, showing how a digital service for genetic testing in #BreastCancer is as effective as traditional methods⬇️📹
@VJOncology
https://t.co/U7n3LcNo8Z

[Zack Pemberton-Whiteley (he/him) @ZPWHITELEY]

Thank you to all at @cmlnet #CMLHZ23 for this kind tribute. An amazing community, a pleasure to be here with such great friends and advocates.

[CML AdvocatesNetwork @cmlnet]

Šarūnas Narbutas closing the last session for #CMLHZ23 talking about QOL survey - patient generated evidence!

[CML AdvocatesNetwork @cmlnet]

Panel discussion in progress! #CMLHZ23

[CML AdvocatesNetwork @cmlnet]

The 2023 Global Leukemia Experience Survey is available in various languages! It only takes few minutes to share your experience and let your voice be heard! START NOW: https://t.co/o8jFVpZcB3
#BeLeukemiaAware #PatientSurvey

[Zack Pemberton-Whiteley (he/him) @ZPWHITELEY]

I am honoured that my friend Elo from @HENZOKENYA has very kindly brought me a blanket at CML Horizons #CMLHZ23 @cmlnet all the way from Kenya 🇰🇪

[Zack Pemberton-Whiteley (he/him) @ZPWHITELEY]

@NScully_ showing the room at #CMLHZ23 @cmlnet how she used AI to make a video with over 34,000 views - time taken, just a few MINUTES!

[Zack Pemberton-Whiteley (he/him) @ZPWHITELEY]

Packed room at #CMLHZ @cmlnet for @NScully_’s talk on using digital tools (including social media and AI) in #PatientAdvocacy

[Zack Pemberton-Whiteley (he/him) @ZPWHITELEY]

@cmlnet #CMLHZ23 @scicommchar

[Zack Pemberton-Whiteley (he/him) @ZPWHITELEY]

A great example of policy work from @scicommchar - talking about how to balance priorities, internally and externally. And how many different ‘policy makers’ there can be to talk to. Work out who, how and why?

#CMLHZ23 @cmlnet

[Zack Pemberton-Whiteley (he/him) @ZPWHITELEY]

What are you asking for - a new commitment or implementation of an existing commitment? You have to know where on the spectrum the policy makers are @cmlnet #CMLHZ23

[Zack Pemberton-Whiteley (he/him) @ZPWHITELEY]

Hochhaus reminds us that only 40% are eligible for TFR, and 50% relapse. So only 20% are ‘cured’ (he says we can argue the semantics of if it’s cured). And calls for work to improve. And @SharfGiora reminds us that’s only in the western world, and not the global reality #CMLHZ23

[CML AdvocatesNetwork @cmlnet]

🌟 To finish off day 1 at #CMLHZ23, Andreas Hochhaus, Menon Hari and Gerald Clements will be debating on What can we realistically hope for as advocates? and How much development is happening in CML in the future? Let's hear!

[Acute Leukemia Advocates Network (ALAN) @AcuteLeuk]

Our Network Director @SamanthaNier is leading a Chair Yoga session at #CMLHZ23 @cmlnet

Keeping everyone refreshed and concentrating for all the sessions!