Author Archives: Ellie Challis

PTENUKI at the The PI3K-AKT-mTOR-PTEN pathway meeting in Barcelona

In September our trustees Ellie and Priyanka had the opportunity to represent PTEN-UKI at ‘The PI3K-AKT-mTOR-PTEN pathway: a new era in basic research and clinical translation’ conference in Barcelona which focussed on cell signalling pathway that PTEN is a part of. The conference was attended by researchers, clinicians and people from pharmaceutical companies. The event […]

PTEN UK & Ireland Patient Day summary 2023

On Saturday 24th June 2023 we held our 6th PTEN Patient Day in Oxfordshire, kindly hosted by the HealthScience communications consultancy Oxford PharmaGenesis. It was a beautiful sunny day so we were able to enjoy children’s entertainment and a BBQ in the beautiful walled garden. Whilst the children enjoyed the entertainment by Captain Fantastic we were able to give […]

One month to go until the next PTEN UK and Ireland Patient Day!

We are very excited that our 2023 PTEN Patient and family Day is just around the corner. Everyone is welcome! Date: 24th June 2023 Time: 10:30am – 3:30pm Venue: Tubney Warren Barn, Oxford, PharmaGenesis, Tubney, OX13 5QJ The day promises to be full of fun with children’s entertainment from Captain Fantastic! . We also have a delicious summer BBQ from All Events.  […]

PTEN Wellbeing Clinics

EXCITING NEWS!!! In the PTEN community we all understand the impact that living with a PTEN mutation can sometimes have, both physically and mentally. Therefore, PTENUKI are pleased to launch the *PTENUKI Wellbeing clinics* in collaboration with Rareminds. These wellbeing clinics will be monthly, online sessions available to all patients, parents, carers and family members […]

PTENUKI – new Chair of trustees

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 […]

PTENUKI visits Rare Fest

It is said over 3.5million people in the UK have over 7,000 rare diseases, 85% do not have a treatment for their condition. The Cambridge Rare Disease Network works to build a community to address the unmet needs of these people living with rare conditions. This month saw their Annual Rare Fest, which is a […]