#nspku — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #nspku, aggregated by home.social.
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🔬 The latest on PKU treatment from NSPKU's October conference - and what they might mean for those living with PKU.
💊 Sepiapterin (Sephience)
🧪 JNT-517, and MZE782
🩸 At-home phe monitors
🗓️ Published on PigPen.page (Want to be the first to see my posts? Subscribe for free emails.)
🔗 https://www.pigpen.page/whats-in-the-treatment-pipeline/
#PKU #Phenylketonuria #RareDisease #InheritedMetabolicDisorders #LivingWithPKU #NSPKU
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🔬 The latest on PKU treatment from NSPKU's October conference - and what they might mean for those living with PKU.
💊 Sepiapterin (Sephience)
🧪 JNT-517, and MZE782
🩸 At-home phe monitors
🗓️ Published on PigPen.page (Want to be the first to see my posts? Subscribe for free emails.)
🔗 https://www.pigpen.page/whats-in-the-treatment-pipeline/
#PKU #Phenylketonuria #RareDisease #InheritedMetabolicDisorders #LivingWithPKU #NSPKU
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One Man. 10 Days. An epic challenge.
At 7am on 28 July, PKU dad Ian Spriggs will jog out of the car park at Southmead Hospital, Bristol and point his battered trainers north.
Ten days, 110-ish hours of foot‑time, and roughly 370 miles later, he hopes to trot through the doors of the Royal Victoria Infirmary, Newcastle, the hospital that has supported his daughter Molly since birth.
Please support Ian’s quest!
https://www.pigpen.page/bristol-to-newcastle-2025/ -
It begins: my first phone call from the surgery to confirm if I absolutely need my monthly #PKU medicine “only it’s a bit expensive”.
Apparently, they plan to call to check this with me every month.
Going to head this off at the pass by getting my Clinic to write them a letter, and send them the #NSPKU documents explaining pku to #GP surgeries 🤞🤞🤞
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As much as I loved the NSPKU conference, I'm happy to be back home with a toaster that toasts toast to my standards.
The one at the conference looks like it would toast bread to a crisp, but then it was just lightly cooked?!?!?
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As much as I loved the NSPKU conference, I'm happy to be back home with a toaster that toasts toast to my standards.
The one at the conference looks like it would toast bread to a crisp, but then it was just lightly cooked?!?!?
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As much as I loved the NSPKU conference, I'm happy to be back home with a toaster that toasts toast to my standards.
The one at the conference looks like it would toast bread to a crisp, but then it was just lightly cooked?!?!?
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Here are some of the photo albums of the NSPKU conference 2024:
https://photos.app.goo.gl/g5jCVEKoUFAFAxv96 - what's in the pipeline
https://photos.app.goo.gl/DtCGiA39D1sQuqyB8 - mRNA therapy treatment
https://photos.app.goo.gl/bwgCwNRpxd5xk2Ls9 - European Guidelines
https://photos.app.goo.gl/ZbdW5YbXuYgKDZNT9 - NSPKU Campaign 2024
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Here are some of the photo albums of the NSPKU conference 2024:
https://photos.app.goo.gl/g5jCVEKoUFAFAxv96 - what's in the pipeline
https://photos.app.goo.gl/DtCGiA39D1sQuqyB8 - mRNA therapy treatment
https://photos.app.goo.gl/bwgCwNRpxd5xk2Ls9 - European Guidelines
https://photos.app.goo.gl/ZbdW5YbXuYgKDZNT9 - NSPKU Campaign 2024
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Here are some of the photo albums of the NSPKU conference 2024:
https://photos.app.goo.gl/g5jCVEKoUFAFAxv96 - what's in the pipeline
https://photos.app.goo.gl/DtCGiA39D1sQuqyB8 - mRNA therapy treatment
https://photos.app.goo.gl/bwgCwNRpxd5xk2Ls9 - European Guidelines
https://photos.app.goo.gl/ZbdW5YbXuYgKDZNT9 - NSPKU Campaign 2024
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It hasn't quite hit me that I'll be going to the NSPKU conference this Friday...
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To all my PKU folks in the UK - the NSPKU has a *great* section on foods that are suitable for PKU folks as well as the relevant exchanges.
Please check those docs here: https://nspku.org/documents/?wpdmc=dietary-info
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One of the benefits of having a new house is that I get to register with the NSPKU charity all over again! 🥰
#NSPKU #charity #movingHouse #house #pku #phenylketonuria #phenylcetonurie
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Here is some of the posters at the ESPKU conference by dietitians:
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Here is some of the posters at the ESPKU conference by dietitians:
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I'm going to be sharing some photo album of the slides at the ESPKU event. This will be a thread! 🧵
These slides are all on Google Photos, but if you want the photos on another service (like Outlook or iCloud), let me know and I can try and get them shared.
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I'm going to be sharing some photo album of the slides at the ESPKU event. This will be a thread! 🧵
These slides are all on Google Photos, but if you want the photos on another service (like Outlook or iCloud), let me know and I can try and get them shared.
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I'm going to be sharing some photo album of the slides at the ESPKU event. This will be a thread! 🧵
These slides are all on Google Photos, but if you want the photos on another service (like Outlook or iCloud), let me know and I can try and get them shared.
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I'm going to be sharing some photo album of the slides at the ESPKU event. This will be a thread! 🧵
These slides are all on Google Photos, but if you want the photos on another service (like Outlook or iCloud), let me know and I can try and get them shared.
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I'm going to be sharing some photo album of the slides at the ESPKU event. This will be a thread! 🧵
These slides are all on Google Photos, but if you want the photos on another service (like Outlook or iCloud), let me know and I can try and get them shared.
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And that’s the ESPKU done! I had such a great time!
Many thanks to @Chloeormerod @poconnor @skat plus others for chatting with me and making the event that much more better!
I also have pictures of the slides of the latest drugs that, once I’m back home, I’ll make some online album and share the album for folks who couldn’t attend to see 👍 ( @ClairTheGinger )
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And that’s the ESPKU done! I had such a great time!
Many thanks to @Chloeormerod @poconnor @skat plus others for chatting with me and making the event that much more better!
I also have pictures of the slides of the latest drugs that, once I’m back home, I’ll make some online album and share the album for folks who couldn’t attend to see 👍 ( @ClairTheGinger )
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The ESPKU cake has been lit!!!
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The ESPKU cake has been lit!!!
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The ESPKU dinner was delicious!!
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The ESPKU dinner was delicious!!
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Heads up for anyone attending the second meeting “Starting the conversation” - it is in the Meeting Room Tactic in the East Side Rooms Hotel
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Heads up for anyone attending the second meeting “Starting the conversation” - it is in the Meeting Room Tactic in the East Side Rooms Hotel
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This dinner has won ESPKU by far. Everything by I tried is an absolute smash hit.
The chef has really outdone themselves.
Also, stealing @skat’s idea to take a picture of the menu
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This dinner has won ESPKU by far. Everything by I tried is an absolute smash hit.
The chef has really outdone themselves.
Also, stealing @skat’s idea to take a picture of the menu
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Last slide sums it up
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Last slide sums it up
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Some interesting notes about the future of pku:
Thanks to COVID vaccine innovations, the technology used to kill of Covid is going to be used to generate working PAH enzymes in the body. It’s currently in very early days, but it seems very promising given it’s based off the COVID foundations…!
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Some interesting notes about the future of pku:
Thanks to COVID vaccine innovations, the technology used to kill of Covid is going to be used to generate working PAH enzymes in the body. It’s currently in very early days, but it seems very promising given it’s based off the COVID foundations…!
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ESPKU lunch:
* low protein chicken burger (I was late to this)
* low protein pizza (delicious)
* low protein soup (ok)
* spaghetti (ok) with meatballs (nice)
* chips (good)
* cakes (very filling, I feel sleepy 🥱 😴💤) -
ESPKU lunch:
* low protein chicken burger (I was late to this)
* low protein pizza (delicious)
* low protein soup (ok)
* spaghetti (ok) with meatballs (nice)
* chips (good)
* cakes (very filling, I feel sleepy 🥱 😴💤) -
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
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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
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Got to meet Lisa from Galen pharma, it was a nice catchup!
Very lovely person, and the Galen Microtabs are definitely worth checking out!
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Got to meet Lisa from Galen pharma, it was a nice catchup!
Very lovely person, and the Galen Microtabs are definitely worth checking out!
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Some new GMP sachets from @Nutricia - these are the lowest calorie GMP mixes on the market (the mix-in one has no taste whatsoever - they gave me a spot test to tell the difference and I failed it).
Would absolutely love to try these in the future!
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Some new GMP sachets from @Nutricia - these are the lowest calorie GMP mixes on the market (the mix-in one has no taste whatsoever - they gave me a spot test to tell the difference and I failed it).
Would absolutely love to try these in the future!
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A new contender - Prekulab - have two new products:
LNAA series - you can have *up to* 80% normal food, and the rest is tablets/powder.
AA series - up to 20% normal food, 80% tablets powder.I believe the person said the LNAA total tablets amount is body weight in kg/2. For example, for me I’m 80kg, so I’d have 40 tablets a day.
Spread that across the day, it would probably be 10 tablets in the morning, 20 in the afternoon, and 10 in the evening. Interesting!
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A new contender - Prekulab - have two new products:
LNAA series - you can have *up to* 80% normal food, and the rest is tablets/powder.
AA series - up to 20% normal food, 80% tablets powder.I believe the person said the LNAA total tablets amount is body weight in kg/2. For example, for me I’m 80kg, so I’d have 40 tablets a day.
Spread that across the day, it would probably be 10 tablets in the morning, 20 in the afternoon, and 10 in the evening. Interesting!
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A new contender - Prekulab - have two new products:
LNAA series - you can have *up to* 80% normal food, and the rest is tablets/powder.
AA series - up to 20% normal food, 80% tablets powder.I believe the person said the LNAA total tablets amount is body weight in kg/2. For example, for me I’m 80kg, so I’d have 40 tablets a day.
Spread that across the day, it would probably be 10 tablets in the morning, 20 in the afternoon, and 10 in the evening. Interesting!
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IT’S COMING HOME!!
IT’S COMING!!
BLOOD TESTS COMING HOME, IT’S COMING!!
Now, these are prototypes, BUT!
* Result in 2 mins
* Records in app
* Results get sent automatically to doctorsYour move, post box 📮♟️
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IT’S COMING HOME!!
IT’S COMING!!
BLOOD TESTS COMING HOME, IT’S COMING!!
Now, these are prototypes, BUT!
* Result in 2 mins
* Records in app
* Results get sent automatically to doctorsYour move, post box 📮♟️
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IT’S COMING HOME!!
IT’S COMING!!
BLOOD TESTS COMING HOME, IT’S COMING!!
Now, these are prototypes, BUT!
* Result in 2 mins
* Records in app
* Results get sent automatically to doctorsYour move, post box 📮♟️