Chair and Coordinator
Wendy is Chair, Coordinator and Co-founder of the Norrie Disease Foundation.
Wendy's son Josh has Norrie Disease. When she realised there was no research or treatment anywhere in the world for the Norrie Disease progressive hearing loss she decided to co-found a charity that would help strengthen a UK Norrie network and promote pioneering research into finding a treatment for the hearing loss.
Roles and Responsibilities:
- Ensuring that the board fulfils its legal requirements;
- Helping with planning and running of trustee meetings;
- Acting as a spokesperson for the charity;
- Driving the Norrie Disease Foundation forwards to achieve its aims and objectives of engaging in fresh new research whilst supporting and strengthening the Norrie community.
- Overseeing all Norrie Disease Foundation activities
- Coordinating and working on driving new research forwards
- Setting up a Norrie Disease Patient Registry with intention to collaborate globally
- Coordinating the Norrie Disease Foundation Medical Advisory Board meetings
- Raising profile of Norrie disease through Patient Advocacy Groups; research seminars; conferences; workshops