Sale mum leads groundbreaking research and awareness event into Neurofibromatosis

Carly Jim with her daughter Ellie

Carly Jim with her daughter Ellie

First published in News

A FIRST of its kind research and awareness event for a genetic condition will take place at Manchester Metropolitan University on February 15.

Key researchers, geneticists and those who suffer from Neurofibromatosis (NF) will come together for the free one-day event to share knowledge about condition.

MMU’s Dr Carly Jim, from Sale, organised the event and is mother to toddler Ellie, who suffers from the condition.

She said: “NF remains something of a mystery to many medical, social and educational professionals who may have never heard of the condition or supported someone with it before.

“It is only by bringing medical experts and those with the condition together that we can improve the lives and treatment of those living with the complexities of NF.”

There are two forms of the condition. NF1 causes flat brown birth marks on the skin, freckles in unusual places, neurofibromas 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.

The event, held at MMU’s Research Institute for Health and Social Change, will be presented in two halves and tickets are available for each or all day.

The morning session will be medically and research orientated, with the second half of the day offering a chance for those living with the condition to share their experiences.

The Neuro Foundation, Children with Tumours, Changing Faces and NF1 sufferer Adam Pearson, who appeared on Channel 4’s Beauty and the Beast series, will also be giving talks.

Dr Jim added: “We can’t change the medical diagnosis for people, but by sharing experiences we can identify things that matter to people with NF and push to change those.” For more information visit: http://nfwellbeing.eventbrite.co.uk/

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