The Lived Experience Committee (LEC) is a voluntary group of individuals living with pituitary conditions, chaired by Alexia Deleligne, who is a trustee of The Pituitary Foundation. The purpose of the committee is to anchor the collective voice of people living with pituitary conditions at the heart of The Foundation’s plans and work, through regular consultations and meaningful engagement.
The LEC advises The Foundation on the work we do to ensure it is relevant, up-to-date and reaching as many people with a pituitary condition as possible. On occasion, the LEC works with our Medical Committee to ensure our pituitary community’s views are brought together with healthcare professionals.
The LEC looks to represent the diverse voices of those affected by pituitary conditions, and feed this into long-term strategic projects so we can foster a long-standing relationship between people living with pituitary conditions and our work within the charity.
Introducing the committee members
Steve Harris
Steve was diagnosed with acromegaly in 1987 and went on to have surgery in 1988 and radiotherapy in 1992. Steve has been involved with The Foundation almost from its launch and has taken on various roles, including a trustee, phone helpline operator, event supporter and proof reader of our member’s magazine, Pituitary Life. He also founded the Birmingham Support Group and ran it for 14 years.
Steve has a background in technical information dissemination and has strong IT skills.
Ben Marinic
As a member of The Pituitary Foundation’s Lived Experience Committee, Ben is driven by a personal journey of overcoming a pituitary tumour, which was surgically removed in 2020. This experience deepened his commitment to supporting others facing similar challenges.
Ben has a background in enterprise software development and brings a technical perspective to his work. He is currently collaborating with the NHS on a research project aimed at improving outcomes for patients with adrenal insufficiency. His role on the committee allows him to contribute to an organisation that provides invaluable support and resources to patients like himself.
Ketan Mistry
Ketan was diagnosed with acromegaly in late 2014 and went on to have surgery to remove a tumour one week after his 30th birthday. In January 2024, he was further diagnosed with prolactinoma that has resulted from a second tumour. This time, he is being treated with medication.
The work of The Pituitary Foundation, particularly the information provided, has been a huge support to Ketan and his family.
Gabrielle de Witte
Gabrielle is a graduate medical student and surgical healthcare assistant based in Kent. She was diagnosed with hypopituitarism in 2021 while completing her Biomedical Science and Anatomy degree in London. In 2022, she joined the Pituitary Foundation as a Helpline Volunteer and is now part of the Lived Experience Committee.
Rachel Lygoe
Rachel was diagnosed with a pituitary tumour at 18 years old. She had surgery in 2022 and now manages regrowth. Rachel lives in London and has a professional background in health and life sciences policy.
Roz Way
Roz has acromegaly and was diagnosed when she was 25, nearly 20 years ago! After two surgeries in 2005, many years on a variety of medications and another surgery in 2024, Roz has a lot of experience of living with acromegaly and navigating the health system.
Roz has worked across the UK health system all her career and uses both her personal and professional experiences to try and help improve NHS and patient outcomes.
Kevin Williams
Kevin was diagnosed with craniopharyngioma in 2004 and had surgery that year, followed by hormone replacement therapy. His second operation was in 2013 and he went on to receive radiotherapy. He has always maintained contact with The Pituitary Foundation but is now looking to work more closely with us as part of the Lived Experience Committee.
He has authored two wrestling books and volunteers with his local history group. He looks to bring his skills to the Pituitary Foundation to help support those affected by pituitary conditions.