LIVING WITH PKU AND THE EMPOWERING ROLE OF ADVOCACY
Bernadette Gilroy, Chair PKUAI joins group of Inspirational Speakers @ TEDX TRALEE this October
The PKU Association of Ireland (PKUAI) are delighted to announce Bernadette Gilroy, Chair, PKUAI is part of the line-up of inspirational speakers taking part in the TEDX TRALEE next Month – Thursday 6th October, 2022. Bernadette will present ‘Living with PKU and the Empowering Role of Advocacy’ aiming to highlight the important role advocacy plays for rare disease and raise critical awareness about the rare metabolic disease – PKU.
To celebrate PKUAI are offering a pair of tickets for a pair to enjoy the TEDX Talk Tralee in person. The prize includes 2 tickets and 1 night’s accommodation for 2 people in Tralee. Full terms and conditions to be sent to all competition participants by email.
Simply answer the following question by 29 September 2022; Which European country has one of the highest rates of PKU?
Send your answers by email Marked: TEDX TALK Competition > firstname.lastname@example.org.
In Ireland today over 700 Irish people live with Phenylketonuria, or PKU (1: 4,500 people), one of the highest rates in Europe. PKU is a rare genetic disease that affects a person’s metabolism. The invisible metabolic condition, detected by the heel prick test, prevents the body breaking down an amino acid called phenylalanine (PHE), a natural substance found in food; a building block of protein. If untreated, and/or unmanaged on a daily basis, PKU results in permanent brain damage.
The Fourteen inspiring speakers, including Bernadette taking to the stage include: Claire Walsh (Finding the extraordinary in the ordinary), Ciaran Prior (Life lessons – how to deal with death), Iulia Potor (Net Zero Marketing – the most powerful response to save the planet), Thaler Pekar (The power of paradox), Jana Ostr (Conquer the world with Hypnosis), Dr Tony Murphy (Globe Community Initiatives), William Micklem (The GO rules – How to run your own race), Sharon McCArthy (Adult Autism Journey), Gareth Landy (Breaking the taboo on male infertility & XYZ), Ra James (Why you will never find your purpose), Tricia Healy (Looking at the elephant), Franciska Acs (Embrace your passion to embrace happiness).
Bernadette Gilroy, Chairperson, PKU Association of Ireland, is also a Lecturer at Munster Technological University Kerry and researcher at Dublin City University. Bernadette lives with a family member with Phenylketonuria (PKU), a rare metabolic condition that affects a person’s ability to metabolise protein and if left untreated can lead to devastating neurological complications. Bernadette has been involved in the PKU Association of Ireland’s (PKUAI) advocacy campaigns with the main objectives of empowering the PKU community by raising awareness, improving health services, and accessing innovative treatments. A graduate of the Irish Platform for Patient Organisations, Science and Industry (IPPOSI) Patient Education Programme, Bernadette is also a member of the University College Dublin Public and Patient Involvement Ignite Executive Committee, the IPPOSI Board, the EUPATI National Platform and an Irish Delegate for the European Society of PKU and Allied Disorders.
In the spirit of ideas worth spreading, TEDx is a program of local, self-organized events that bring people together to share a TED-like experience. At a TEDx event, TED Talks video and live speakers combine to spark deep discussion and connection. These local, self-organized events are branded TEDx, where x = independently organized TED event. The TED Conference provides general guidance for the TEDx program, but individual TEDx events are self-organised.
For further information about PKU or for competition info contact: Emer O’Reilly T: +353868593658
The PKU Association of Ireland aims to assist and support those affected by PKU, and other metabolic disorders that can be managed just like PKU. PKUAI share tips, advice, stories, and recipes and generally support each other as we learn about this rare condition, helping to make it as easy to manage as possible. Our other goal is to strive continuously for the best possible care for people with PKU. This includes raising awareness of the condition and calling for more proactive and holistic care throughout childhood and into adulthood. PKUAI believe that with a more determined and scientific approach to treating PKU, people living with PKU will find it less of a burden on their lives and will be better able to reach their full potential.