poconnor

poconnor, 11 months ago to random

So @soheb challenged me to produce a graphic showing the genetics of #PKU.

Loads of information to squeeze into a space, but what do you all think please?

poconnor, 11 months ago to random

Raaaaaaarrrrrggggghhhhhhh.

More than a week worth of daily blood spots gone missing in the post. So a quarter of my second Sapropterin trial has been useless and I still don’t have an answer.

There will be swearing.

poconnor, 10 months ago to random

@soheb hey, what was your youtube channel again, please?

poconnor, 5 months ago to random

🎉 On the 4th day of the #12DaysOfJoy, let's create a #HopefulHarmony!

Share a song, quote, or image that brings hope and joy during challenging times.

'The Best' by Awolnation always gets me dancing (odd video though!)

Spread positivity with your favourite uplifting tune! 🎶

poconnor, 9 months ago to ilaughed

I did it! My first video content on #PKU

It is one of those psychological things that I’ve been getting over, particularly since I can never be bothered with make up! So here it is what is PKU?

#PKU #pku #livingwithpku #LivingWithPKU #video #bekind
#FckItFriday

video/mp4

poconnor, 10 months ago to random

New series on #Sapropterin (#Kuvan)

I have spent months doing baseline testing and trialling Sapropterin. Like many others, it has proven a hard road, but I feel ready to share my experience in a series of 3 blogs.

Here is the first one for your weekend reading:

Sapropterin trial, part 1: genetics & patience.

to https://pigpen.page/

#LivingWithPKU #PKU

poconnor, 10 months ago to random

Highlighted by Denise Hoffman on Twitter:

New systematic review on optimal phe levels. Authors conclude lifelong upper blood phe target should be 360umol/L #pku #phenylketonuria https://www.gimjournal.org/article/S1098-3600(22)01063-2/fulltext

poconnor, 8 months ago to random

#FluffMuppets Top tips for keeping cool.

video/mp4

poconnor, 7 months ago to random

Me: remember, you are leading a workshop at the #PKU conference tomorrow so need to look professional.

Also me: Or… Dinosaurs 🦕!

#ESPKU #ESPKU2023 #espku #espku2023 #NSPKU2023 #nspku #NSPKU #livingWithPKU #LivingWithPKU #livingwithpku

poconnor, 11 months ago to gardening

Loganberries are a thornless cross between blackberries & raspberries.
Phe- free, tasty, and more productive than all my strawberry plants!

#LivingWithPKU #Pku #pkulife #gardening #allotment

Harvest with a 2:1 ratio of loganberries to strawberries

poconnor, 11 months ago to random

Whoop, there have been a few sales which means the NSPKU with new getting some funds.

Please spread the word to help boost sales and support throes amazing patient charity!

#LivingWithPKU #PKU #pkulife #Charity
Www.PigPen.page/books

poconnor, 11 months ago to Stoicism

Happy #Book Birthday
#LivingWithPKU hit NUMBER 1 in the Genetics hottest releases list. It also made the top 6 bestsellers list, up there with Richard Dawkins and Adam Rutherford.
#PKU #AdultPKU #BookBirthday
https://pigpen.page/happy-birthday-to-living-with-pku/

poconnor, 11 months ago to random

New series on #Sapropterin (#Kuvan)

I have spent months doing baseline testing and trialling Sapropterin. Like many others, it has proven a hard road, but I feel ready to share my experience in a series of 3 blogs.

Here is the first one for your weekend reading:

Sapropterin trial, part 1: genetics & patience.

to http://PigPen.page

#LivingWithPKU #PKU

poconnor, 10 months ago to random

Sneak peek for PKU Talk folks:

A new video review of #LivingWithPKU featuring our very own @jjunebrown

Thank you so much for this!

P.S if anyone has a good captioning to, please let me know!

#livingwithpku #PKU #pku #Pku #pkuawareness #pkulife #pcu

video/mp4

poconnor, 11 months ago to random

Hey @soheb , you are great at this marketing jazz - am taking notes ! 😆

poconnor, 11 months ago to animals

Morning adventure with the #FluffMuppet

#keeshonden #dogsOfMastodon

poconnor, 5 months ago to random

🎉 Day 1: Cherished Connections.

On this first day of our #12DaysOfJoy, let's shower gratitude on our rockstars

Friends & Family!

Tag those who light up your life, bring joy to your journey, and make every day brighter.

poconnor, 7 months ago to random

The NSPKU / ESPKU conference has refilled the stationery cupboard- time to get writing!

#LivingWithPKU #NSPKU2023 #Authors

poconnor, 2 months ago to random

The March PigPen newsletter includes:
➡️ possible new #PKU treatment
➡️ help with identity after #BrainInjury
➡️ shape your health care in future

🥂Sneak peek of #NewBook The Red Hat Stories!

https://buff.ly/4bXz3pU
#TheRedHatStories
#LivingWithPKU
#LivingWithMildBrainInjury

poconnor, 5 months ago to random

🎉 Our Advocacy Angels take the spotlight on our 3rd day of #12DaysOfJoy!

Tag an advocate who has inspired you or made a positive impact in the patient community.

Let's celebrate the power of advocacy! 👼 #AdvocacyAngels

poconnor, 2 months ago to shortstory

Please support #TheRedHatStories Kickstarter!

This is my first foray into fiction, though I began writing The Red Hat Stories in 2006.

Please help ensure these stories are published. Pledges will start at £1.

https://buff.ly/4ciAXBD

#NewBook #ShortStory #Authors #AmWriting

poconnor, 1 month ago to animals

Friday afternoon energy levels

#FluffMuppet #DogsOfMastodon #dogs #FridayVibes #keeshond

poconnor, 1 month ago to Pubtips

The Red Hat Stories will be published! A huge thank you to all those who have supported the book so far - especially @soheb

You can still participate as the campaign will run until May the fourth (#StarWarsDay). Go to Kickstarter .com and search “The Red Hat Stories”

Thank you all

#bookstodon #TheRedHatStories #Kickstarter #Publishing #NewBook

poconnor, 17 days ago to uk

The #aurora seen from Hertfordshire, #UK at 23:30 10th May 2024

image/jpeg

poconnor, 27 days ago to random

When every month is #pkuawarenessmonth … 🥳

#PKU #LivingWithPKU #LowProtein

https://www.instagram.com/reel/C6betLNoKnm/?igsh=YjBta3IydnhiMzE3