Information, help & support
for those who need it.
My name is Aoife O Donovan. I am 31years old from Cork. I haveNeurofibromatosis type 1 (NF1). I wasdiagnosed at 6 weeks of age. I am thefirst person in my family to have thecondition and there has yet to be anyfurther family history of the condition.In the future, there will be a 50%chance of passing […]Read more
My name is Pádraic McCaffrey, Icome from Galway. I was born withNeurofibromatosis, NF1. I suffer froman Optic Glioma tumor on the left sideof my face. When I was born both myeyes were fully open and as I wasgrowing up, my eyelid drooped downand closed my eye. This causedproblems and at times led to a lot […]Read more
If you really believe in something it is always within your reachWhen I was growing up with NF it was very hard. As you know children can be mean without realizing what they are sayingor doing. I was called names and jeered as more fibromas appeared.Growing up with NF can be difficultWhen I left school, […]Read more
My name is Roisin McConnell and I am livingin Co Westmeath. I am from Athboy, CoMeath originally and I am a true Meathwoman and have not forgotten my roots.Living with NF I have a couple ofcomplications and NF has had a majorimpact on my life. I was born with atumour which affected the right side […]Read more
My name is Simone, I’m 38 and Ihave NF1. I’m the first in my familywith NF. I was little when doctorsfound out what I have.I have known bullying all my life, sinceschool. I have no real friends, onlysocial media friends I can talk to. Mytumors are all over my skin.Music is helping me in everysituation. […]Read more
Our journey that led us toNeurofibromatosis NF1 beganin 2015. Our son Noah wasdiagnosed when he was 3 yearsold. Prior to the NF1 diagnosisthere were many challenges &concerns we had about ourson’s overall developmentwhich led us to a diagnosis ofNF1.We started investigating theseconcerns when Noah was onlythree months old. He was notmeeting any of his milestones.He […]Read more
Hi my is Gillian and I am a 41 year old mother of 4. Eachof us all have a diagnosis of NF. I was diagnosedwhen I was 5. I always suffered with pain andheadaches and then as I got older, I learnt to normalise mypain (which was a good thing).I have quite a number of […]Read more
The following information booklets have been recently updated to provide help and support to NF members and families. We hope that this information proves to be useful to the NF community. The PDFs can also be accessed from our facebook literature group https://www.facebook.com/groups/nfirelandliterature/ Information, help & support for those who need it About Neurofibromatosis – […]Read more
Dear members Your new committee is starting to learn how an association committee is run. They are starting to see the financial condition the association is actually in. The committee is there to oversee and run the association on a day to day basis. They see the committee cannot do everything in fundraising and […]Read more
A Fundraising Quiz Night will take place in Bush Bar & Lounge, Cut Bush, Co. Kildare, R56 Y522 on Friday 20th July @ 21:00. Entry is €20 per table of 4 with a First prize of €120. Furthermore, Bush Cycling Club have set up a Go Fund Me page for the fundraiser in which donors can donate directly […]Read more
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