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/
Catch up on this great discussion on creativity and rare disease.
Rare Creatives’ Lives: Storytellers on Rare Disease In the Arts:
1. Who first inspired them to become creatives?
2. What are their creative processes like now?
3. How their storytelling shares rare disease lived experience?
4. Advice for those who dream of a creative career?
5. Why storytellers can spark advocacy in a rare disease community?
https://www.youtube.com/watch?v=miuzmwNEGHs
#PKU #PKUAwareness #PKUDay #PCU #Phenylketonuria #RareDisease
Celebrating #PKUDay2024 with:
1️⃣ A spotlight on research, and clinical trials in the #UK, which you can support now!
2️⃣ A sale all weekend! 20% off Living With PKU ebook www.PigPen.page
🚨 UK & US readers can buy direct via Shopify, which supports me more 🥳 🙏
June 28th is #InternationalPKUDay, created to spread awareness of #PKU
I'm celebrating this year by donating 50% from sales of the book #LivingWithPKU to the NSPKU, a valuable patient charity.
Why not learn more about #PKU and support a good cause!
Today is International PKU Day, an important occasion to reflect on the unmet needs of those living with this rare disease, and to raise awareness of the need for additional measures to ensure the best quality of life for them and their loved ones. 👏💪 https://n.respublicae.eu/official_espku/status/1673949356951576579
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ESPKU: Happy International PKU Day! Today for the 10th time we celebrate International PKU Day. Watch this space as we will have lots of interesting things for you. Use our official hashtag #PKUDAY2023 while posting about #PKUDAY and how you celebrate it! https://t.co/jgVmrsImPo
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🐦🔗: https://n.respublicae.eu/SeanKellyMEP/status/1673987413629173763
poconnor
Mark Maguire
Soheb
Pavel Michek
Seán Kelly MEP