We are delighted to announce our new Chair of trustees, Jack Donnelly. Jack is from Coventry and approached the charity at the beginning of 2023 after his daughter Amara was diagnosed with the PTEN gene mutation at the age of 2. Jack felt strongly that after learning of Amara’s diagnosis it became apparent that there was a lack of […]
Category Archives: News
19
Jan
Jan
We hope you had a wonderful festive break! The new year is now in full swing so we wanted to start the year by announcing our hopes and dreams for 2023! We took everything on board that was discussed at our last patient day and have a vision for 2023 to help our community even further. […]
22
Aug
Aug
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. […]
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 [...]
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:
27
Feb
Feb
PTENUKI: making connections First established in 2016, PTENUKI is making great strides to help patients and carers affected by PTEN. Now with a network of over 200 members, a significant proportion of the estimated 300 PTEN patients in the UK, PTENUKI is proud to announce its new Buddy Scheme. The Buddy Scheme will match up […]
07
Aug
Aug
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 We’re hoping to be able to do a newsletter every 6 months which will contain a whole range of useful […]
09
Aug
Aug
We’re delighted to have launched our new website for patients and families affected by PTEN / PHTS. It’s a fairly minimal launch to start with which is intentional, we would rather get smaller amounts of information published more quickly than hold anything back. We have included some introductory information on what the patient group is aiming to […]