Forty-four extraordinary individuals from around the world have united to create the first non-clinical book about Neurofibromatosis Type 2 (NF2) in order to help and inspire others.
NF2 occurs in 1 in 35,000 of the population and involves the growth of multiple benign tumours throughout the nervous system, most commonly seen in the brain and spine. NF2 can cause hearing, sight, balance, and mobility difficulties, and above all can be life-threatening.
NF2: Our Journeys contains a collection of inspirational life stories written by people with NF2 and is the first project to be developed by a new self-help, support, and social advocacy group for people with NF2 called Can You Hear Us?, which was founded in January 2013 by Jessica Cook (who herself has the condition).
“Although I had no control over the progression of the disease, I did have control over the effect it would have on my life” said Julie Broome in the book.
Can You Hear Us? are on a mission to prove that it is possible to live a happy and fulfilled life whilst battling with a degenerative condition that currently has no cure through the uniting and presenting of people who refuse to be defined by the disease.
Jessica says: “I developed Can You Hear Us? as a way of giving a voice to people with NF2, and the book NF2: Our Journeys has achieved just that. NF2 can be an extremely isolating condition due to its nature in being so rare, but it is vital for people to know that they are not alone in what they are going through and for us to encourage each other to take advantage of adversity.”
In the summer, Can You Hear Us? hosted an all-day launch event for the book NF2: Our Journeys at Bar Hill Village Hall in Bar Hill, Cambridge. The event was generously sponsored by Lynda McFaull of The Joe Guglielmi Memorial Fund, The Neuro Foundation and Bee Communications.
In total ninety people attended the book launch. The following fourteen authors were in attendance: Jessica Cook, Shaunna Kelly (Australia), Fred Suter (Germany), Sue Taylor, Natalie, Will Davidson, Jan McGovern, Lynda McFaull on behalf of Joe Guglielmi, Bethany, Claire Middleton, Matthew Trytell on behalf of Nathalie Trytell, Ben Ryan, Susanne Rees and Mark Dickson.
A Palantypist (Speech to Text Reporter) was onsite all day to ensure the event was fully accessible for all our hard of hearing guests, which was kindly sponsored by Bee Communications (who also support this site!).
There was a screening of a short film, produced by the team at Can You Hear Us?, documenting the production process of the book. The hearing guests had the chance to experience what it is like for deafened people when they had to watch the video in complete silence with subtitles.
At 12 noon the book was finally unveiled. The authors in attendance were each presented with the very first copies of ‘NF2: Our Journeys’ and a certificate in recognition of their achievement. After they had their picture taken, they sat down to sign the 182 copies of the book sold on the day.
Congratulations to Jessica and everyone involved in the book, from all of us at the Limping Chicken!
The book is available to buy from the Can You Hear Us? website www.canyouhearus.co.uk priced £8.99 with free postage anywhere in the world. Anyone in the UK with NF2 can request a free copy of the book by contacting their NF2 Nurse (full details on our website).
All funds raised from book sales and donations will go towards future projects for raising awareness of NF2 and supporting those with the condition.
The Limping Chicken is the UK’s deaf blogs and news website, and is the world’s most popular deaf blog. It is edited by Deaf journalist and filmmaker Charlie Swinbourne.
Please note that the views of the writers are their own, and not necessarily the views of the Editor or site as a whole. Read our disclaimer here.
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