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Manchester Metropolitan University hosts successful neurofibromatosis event
6:16pm Thursday 7th March 2013 in News
A SALE mum is celebrating after a research and awareness event that she organised at Manchester Metropolitan University proved a huge success.
Dr Carly Jim, from Atkinson Road, helped host a one day event exploring the genetic disorder neurofibromatosis (NF) on February 15 at MMU’s Research Institute for Health and Social Change.
First of its kind in the UK, the event was a combination of talks from key researchers, geneticists and people living with the condition.
Mum-of-two Carly, who’s daughter, Ellie, suffers from NF1, said: “This knowledge exchange event was a wonderful opportunity to engage with people with NF and professionals with an interest in the condition.”
Carly is instrumental in raising awareness of NF and is highly involved in leading research of the condition at the University.
She added: “When Ellie was first diagnosed I vowed that I would do everything in my power to improve the well-being of people with Neurofibromatosis.”
There are two forms of the genetic condition. NF1 causes flat brown birth marks on the skin, lumps on the skin and mild learning difficulties. In NF2 people develop nervous system tumours typically in the brain and spine and this can cause hearing loss, deafness, and mobility problems.
Feedback from the event was positive with attendees describing it as, ‘brilliant’, ‘superb’, and ‘wonderful’.
Elizabeth Anderson, research associate at MMU, said: “The innovative structure of the day with talks from professionals and people with NF was fantastic and this should be used as a model for other rare conditions.”
Also in attendance was NF1 sufferer Adam Pearson, who appeared in Channel 4’s Beauty and the Beast.
He said: “With events such as this day, hosted by MMU and individuals such as Dr Carly Jim pushing the issue onward, clear benefits can be seen.”