Not many have heard of the rare neuro-genetic condition Neurofibromatosis, despite the fact that it is more common than Cystic Fibrosis, Huntington’s Disease, and Muscular Dystrophy combined. It affects over 25,000 people in the United Kingdom, and over 50% of those develop the condition with no prior family history and without warning. Worse still, once you have the diagnosis there is a 50% chance of passing it onto your own children. Despite this, the National Health Service currently only provides specialist support for people affected by the more extreme form of Neurofibromatosis, Type 2, and a small number of those with complex Type 1. This leaves over 75% of people with NF1 in the UK without specialist support, and The Neuro Foundation is working hard to fill that gap.
 
The marked difference between the families who struggle with the unknown, and those who receive the support they need is tangible, and provides the day to day motivation for the The Neuro Foundation. Charity Director, Karen Cockburn and her team decided to try something different in 2016 in their approach to fundraising.
 
The charity registered as a partner with the crowdfunding service GlobalGiving UK, and asked their community to raise £20,000 - enough to pay a part time Specialist Nurse for year. “We have to find a way to reach more of the country, and we are so grateful to our community and donors for helping us provide this new position. I am already in talks, and look forward to releasing further news later this year” said Karen. Until recently, to fund a Specialist Nurse it required a few large donors to contribute to one nurse. Through this exciting new technique, the NF community was able to make it happen together.
 


Emilio Saavedra was almost 5 years old when his parents found him in his bed suffering an epileptic seizure in April 2013. They rushed him to hospital, and after three days of intensive care the doctor came and delivered the diagnosis of Neurofibromatosis Type 1. Emilio’s mum, Mel describes just how daunting learning about NF can be, “You read things that say your child may never ride a bike, may never ride a scooter....our everyday normal just vanished overnight. Finding The Neuro Foundation with positives, was very helpful and we are three years down the line and Emilio actually does ride a bike and a scooter”. Emilio’s Dad, José also recounts the way the nurses have impacted Emilio’s education “they spoke to the school and they said ‘this is how children with NF1 can best learn’ and putting in this time has meant the teachers can tailor the way he learns….The Neuro Foundation have been a real lifeline for us”.

 


There are too many children out there like Emilio, who don’t receive the support they need which is why the charity works so hard to fund and fill the demand for support required by people with NF. The charity provides a network of Specialist Nurses who provide crucial medical and non-medical support for patients, their families, friends, employers, teachers, other medical professionals and even service providers such as solicitors or social services.

For more information, get in touch with The Neuro Foundation on 0208 439 1234 or visit their website at www.nfauk.org.

 

The Neuro Foundation

Improving the lives of those affected by Neurofibromatosis

W: www.nfauk.org    T: 020 8439 1234    E: Brendan@nfauk.org   

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