Mandy Sanderson

Hello, my name is Mandy and I am one of the Trustees with Max Appeal.   My eldest child has 22q11.2 deletion syndrome and, like many families, our journey to diagnosis was a long one.     

I have worked in the NHS for most of my career (non-clinical) and have used this professional experience to work with Max Appeal over a number of years to support earlier diagnosis and support for people with 22q11.2 deletion and their families: I was part of the team that developed the application to have 22q11.2 deletion on the Newborn Screening heel prick test.  I have been a member of the All Party Parliamentary Group for some years, providing briefing materials and other documents to support awareness-raising and change.  

I have represented Max Appeal and advocated for 22q11.2 awareness at national and specialist committees and forums.   I am a member of an Advisory Group for the National Institute of Health Research (NIHR) Policy Research Unit, and part of my role there is to provide a patient ‘voice’ for people with 22q11.2 deletion syndrome in shaping research into the health and social care workforce.

I was a local regional host for ‘22q at the Zoo’ in Sussex and regularly attend the annual Cranham weekend camp, where I enjoy meeting and learning about other families and children affected by 22q11.2 deletion syndrome.