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My name is Sammy Ainsworth and I became involved in research after my daughter was diagnosed with the chronic condition lupus when she was 14.
For the four years I have been a Patient Research Ambassador and have strongly advocated for young people and parents to get involved and have a voice in many areas of research.
As a parent who’s child has been involved in research I have experience of the trials and challenges that families face as well as the benefits.
I now work at Alder Hey Paediatric Hospital in Liverpool supporting other families and young people to get involved in research and improve the way clinical trials are planned and facilitated. I have presented at many conferences to highlight the needs of young people and parents, helping to highlight how their involvement is essential.
I am a committee member of Lupus UK, a board member of ENCA and am Chair of the young person’s charity RAiISE.