Neurofibromatosis is a condition that effects 1 in 3000 people, basically a child is born everyday with this. It can be hereditary or in my daughter's case just sheer bad luck. NF1&2 involves the uncontrolled growth of tumours along the nervous system, which can result in terrible disfigurement, deformity, deafness, blindness, brain tumours, cancer and death. NF is the most common neurological disorder caused by a single gene and is more common than muscular dystrophy and cystic fibrosis combined.
Sufferers can differ tremendously, family members who all carry the defective gene can all have different variations of it. Thus I think this is why it is so hard to find a definitive cure/treatment
As this condition has such little publicity funding into research is poor. As most research seems to be happening in The States, I am trying to raise awareness by starting an e petition to get the matter debated in parliament, for this to happen I need 100000 signatures. Just think at least 25000 people in the UK have this condition, it might be your neighbour, colleague or family member.
It breaks my heart to hear my 9 year old say "Who will want to marry me with this?".
Follow the link for e petition. Thank you
epetitions.direct.gov.uk/petitions/48586
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General health
Neurofibromatosis 1&2
Daykins · 26/06/2013 19:24
I will sign the petition, Daykins. dh's brother had NF, but no one knew until he sadly was one of the unlucky ones who got cancer in midlife - in fact, even then they didn't figure it out straight away. It was a long time ago.
Hopefully treatment and management are better now, and your 9 year old will be one of the (more likely, I believe) lucky ones who don't get seriously ill with it. I have a 9 year old too, and hear you on the heartbreak - I can only imagine.
Please tell your lovely child that dh's brother had many, many girlfriends - but none were lucky enough to pin him down to marriage 
I have signed too - i think if you start a thread in appeals/media you may get more traffic, I really hope you get the attention it so deserves. It is so very frustrating, I am a biologist and would dearly love to work in research again however I can't find employment, I have a fellowship pretty much lined up but they are unable to secure funding - it is beyond frustrating. I would have been working on a gene involved in breast cancer, yet still there is no money to fund the work 
Money to secure works of art, buy arms etc, don't get me started............arggghhhhh
The only thing i would say is that research that takes place in the states will benefit everyone so keep hoping, genetics is a fast moving field and gene therapy is now available for CF.
Very best of luck xxx
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