Patient / family group for people affected by PTEN / PHTS in the UK & Ireland
United Kingdom
Joined October 2016
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We’re delighted to welcome Ken Upton, Independent SEND Advocate with Talking SENse!, to PTENUKI Patient Day 2025.
🎓 Don’t miss his invaluable insights—there’s still time to sign up: ptenuki.org/ptenuki-patient-…
Joining us at PTENUKI Patient Day is Dr. Joe Christopher from Addenbrooke’s Hospital and the University of Cambridge, where he’s conducting cutting-edge research into inherited cancer risk.
🎤 Don’t miss his session—register now: ptenuki.org/ptenuki-patient-…
🏃♀️🏅 Were you inspired by the incredible stories from the London Marathon? Maybe you've even laced up your running shoes and started your own journey? 👟✨
💥 Check out our Run for Charity page to find out more and grab your place:
runforcharity.com/charity/pt…
We’re excited to welcome Tom Pepper, Chief Executive Officer of PTEN Research, as a speaker at our 2025 Patient Day!
This is your chance to hear directly from a key voice in PTEN research and advocacy.
✅ Sign up while spaces are available: ptenuki.org/ptenuki-patient-…
#PTENUKI
Thanks to your amazing support, we’ve raised an incredible £750 for PTENUKI through the One Lottery! Every ticket sold helps us continue supporting individuals and families affected by PTEN across the UK and Ireland. 💜
Join in today: onelottery.co.uk/support/pte…
We’re honoured to welcome Professor Marc Tischkowitz to PTENUKI Patient Day 2025!
Professor Tischkowitz is Head of the Department of Medical Genetics at the University of Cambridge and Honorary Consultant at the East Anglian Medical Genetics Service, Addenbrooke’s Hospital.
We’re proud to welcome Dr. Katherine Lachlan, our very own PTENUKI medical trustee and Consultant Clinical Geneticist at Wessex Clinical Genetics Service, University Hospital Southampton, to the 2025 Patient Day!
🗓️ Join us and hear from her in person: ptenuki.org/ptenuki-patient-…
📢 Exciting update for our upcoming PTENUKI Patient Day 2025!
It's not just expert presentations you'll hear from — we're also offering peer support sessions focused on mental health and wellbeing 💬🧠💚
📍Sign up now: ptenuki.org/ptenuki-patient-…
⏳ Just a few weeks left until PTENUKI Patient Day 2025! ⏳
💡 Get ready for a day of learning, support, and community with expert talks, networking opportunities, and family-friendly activities!
🎉 Sunday, 29th June 2025
👉 Sign up now: ptenuki.org/ptenuki-patient-…
📣 Reminder: Funding still available for Patient Day! 🧳✨
Planning to attend this month’s PTENUKI Patient Day but need help with travel costs? There’s still time to apply for financial support!
👉 Apply here: docs.google.com/forms/d/e/1F…
Please share with anyone who might benefit!
📢 Fun Ways to Fundraise!
Looking for a fun & easy way to support PTENUKI? 🎉
Try one of these fundraising ideas:
🏃♂️ Take on a sponsored run, walk, or cycle
🍰 Host a bake sale or coffee morning
🌟 Start your fundraiser today: ptenuki.org/fundraising/
🚨 One month to go! Have you registered yet? 🚨
The PTENUKI Patient Day 2025 is happening soon, and we’d love for you to join us!
🗓️ Sunday, 29th June 2025
📍 Location: Sense TouchBase Pears, Birmingham
✨ Don't miss out! Secure your place today:
👉 ptenuki.org/ptenuki-patient-…
We’re delighted to announce that Dr. Anita Chandra—Consultant Immunologist at Cambridge University Hospitals and Affiliate Assistant Professor at the University of Cambridge—will be speaking at our 2025 PTENUKI Patient Day! 🌟
Register now: ptenuki.org/ptenuki-patient-…
#PTENUKI
🎉 Coming to PTENUKI Patient Day next month? We’re so excited to see you! 💙
If travel costs are a concern, we may be able to help. ✈️🚆 There's support available to assist with travel expenses — just let us know!
👉 Apply here: docs.google.com/forms/d/e/1F…
#PTENUKI
👪 Parents & caregivers – navigating a PTEN diagnosis can be challenging, but you don’t have to do it alone!
Find expert-reviewed resources, FAQs, and support at PTENUKI.
📖 Explore more here: ptenuki.org
🌟 We need YOU! 🌟
At PTENUKI, we believe in the power of shared stories — they educate, inspire, and remind us we’re not alone 💛
If you’re interested in sharing your story, please contact Ellie at [email protected] to arrange 💌
🎉 A HUGE shout out and heartfelt THANK YOU to the incredible Sandy Barnett! 🎉
Last month, Sandy took on the Bournemouth Bay to Bay Half Marathon and absolutely smashed it, raising nearly £1,400 for PTENUKI — smashing through his original target of £1,000! 💥🏃♂️💛
💡 Just diagnosed with a PTEN condition? You're not alone!
Getting a diagnosis can feel overwhelming, but PTENUKI is here to support you every step of the way.
Start your journey with the right information 👉 ptenuki.org
We’re thrilled to announce that Sublime Science will be bringing their amazing, hands-on experiments to entertain the children at PTENUKI Patient Day 2025! 🎉🔬
If you haven’t signed up yet, don’t miss out—register now! 👉 ptenuki.org/ptenuki-patient-…
#PTENUKI
🎉 1 Year of the PTEN UK & Ireland Lottery! 🎉
For the past year, our PTEN Lottery has been raising vital funds to support families affected by PTEN 💙—and you can still be part of it!
Join the fun & support PTEN families today! 👉 onelottery.co.uk/support/pte… 🎉
