Summary of the day For the first time since 2019, over 100 people in the PTENUKI community joined together in person for a day of learning, sharing experiences and building relationships as part of PTENUKI Patient Day 2022. The day was held in the Oxfordshire countryside and hosted by the HealthScience communications consultancy Oxford PharmaGenesis. […]
Author Archives: PTENUKI
08
Jun
Jun
Would you like to use your skills and expertise to make a difference? This is an exciting opportunity to join a passionate board of trustees who are committed to the cause and want to help change peoples’ lives for the better. Our main aim is to improve the lives of patients, parents and care givers [...]
27
Feb
Feb
** UPDATE 19th May 2022 ** We have been blown away by the response to our upcoming Patient day If you missed the opportunity to sign up please email kelly@ptenuki to get your name on the waiting list. Please also email Kelly if you previously registered and can no longer make it. We are working [...]
To mark Children’s Mental Health Week we are sharing the work of Dr Alice Welham and team from the University of Leicester on the behavioural and psychological effects of PTEN in children Watch the video to find out more and email: kc274@leicester.ac.uk if you would like to take part in the study. https://youtu.be/imPCKyYEKKw
21
Oct
Oct
PTENUKI are excited to announce the appointment of Kelly Kearley as the new Charity Manager. The charity was originally set up in 2017 by a group of parents and individuals personally affected by a PTEN gene change, with the intention of helping to support each other and other families within this small community. PTEN is a […]
02
Sep
Sep
On behalf of the charity I am delighted to attach to our Summer Newsletter with details of all our updates as well as a link to sign up to our next patient day. – Ellie Download: PTENUKI Newsletter August 2019 View:
18
Oct
Oct
Ellie is in her 20’s and shares her experience. When and how did you first get diagnosed? They found out that my Dad had Cowdens about four years ago (when I was 22) and myself and my sister were then tested. I was then diagnosed a couple of months later and my sister found that […]
20
Sep
Sep
Mike is in his 60’s and shares his experience. When and how did you first get diagnosed? Approx 2013 What symptoms prompted the PHTS/Cowdens/BRRS diagnosis? I had a number of colonoscopies and there was a tendency for polyps to be found. On the basis of this a referral was made to the genetics clinic where […]