Blog

Information, help & support
for those who need it.

A Message from your Chairperson

  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 […]

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Mizen to Malin Head: Bush Cycle Club Fundraiser for NF Ireland

The NF Association of Ireland are delighted to announce details of an upcoming cycle fundraiser. Bush Cycling Club are cycling from Mizen to Malin Head in aid of our organisation, hoping to raise vital funds for the organisation. Mizen Head is based in Co. Cork, while Malin Head is located in Co. Donegal, a journey […]

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VHI Women’s Mini Marathon 2018

Hello all, I hope everyone enjoyed the AGM, we hope to see you and those who couldn’t attend at the next event down the road. We are in the process of forming a new board, with well wishes for the outgoing board, including Eddie Creevey, James Corr, Paddy Griffin and Patricia Nutty. We hope that […]

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Details for NF Association AGM 2018

Hello all, Kevin Kelly here, the Communications and Fundraising Coordinator with the Neurofibromatosis Association of Ireland. Last week I brought to you a message of immense urgency: the need to fill the voluntary roles of secretary and treasurer – it could not be bigger. Indeed, if those roles are not filled following the AGM then […]

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New 2 You: How Eileen Sheehan Helped Achieve Her Dream

EILEEN Sheehan lives in Listowel, Co. Kerry. It is a relatively small town in Kerry, but it has quietly become a hub of activity for the NF Association of Ireland. Earlier this month the NF Ball and NF Fighter Awards were held in the Listowel Arms Hotel. Quietly however there was one woman specifically financially […]

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Strengthening the NF Association; Seeking Corporate Sponsorship

The NF Association are seeking sponsorship opportunities with businesses to raise awareness of the condition and the association, as well as raising much-needed funding in order for the organisation to sustain and grow.   Survival, then growth, is the basic road ahead for the NF Association. We face many challenges as a small national charity, […]

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The NF Community Meet-Up: A Reflection

LAST Sunday was the NF community meet-up at the Nancy Hands Pub in Dublin. It was a great success, where the NF community from every corner of Ireland got together and socialised in a relaxed manner. From a personal point of view, it was a personal milestone too, being the first event which I helped organise […]

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Reflecting Upon Event Week: Two Successful Charity Events

LAST week was a huge week for the Neurofibromatosis Association of Ireland. Held back-to-back, we had the Golf Classic at Corstown Golf Club, followed by the charity football match at Swords Celtic Ground’s. The events went exceedingly well, illustrating many facets of our work; how we can take the lead in organising events, and also […]

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My Child Has NF1: The Parental Paranoia

Editors note: The following is a blog submitted by a member of the Irish NF community, who asked to remain anonymous. The subject of this blog is parental paranoia associated with being a parent of a child with NF.    What’s so different about being an NF1 parent? Or NF1 and parental paranoia – let’s […]

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