9 August 2021
The Neurofibromatosis (NF) Association of Ireland are delighted to tell their supporters about two events taking place this month. Being held in both Dublin and Cork, the meet-ups will take place on August 14 in Cork, and August 15 in Dublin.
As the national charity for those affected by NF, they are hoping to once again provide a safe space for a meet-up and chat in an informal setting. Due to the Covid-19 pandemic such meet-ups have of course not been permissible nor safe, so with restrictions currently lifted, the time for such events is now.
The Cork event, being held on August 14, will take place at Fitzgerald’s Park at 2pm. If you are interested in this event then contact Emma Ní Craith on 087 772 7665. The Dublin event, taking place the following day on August 15, will be held in the Phoenix Park at 2pm. If interested, contact Louise O’Keefe on 089 615 0934.
NF provide friendly peer support groups for families affected by the genetic condition neurofibromatosis. Neurofibromatosis is mainly divided into type 1 and type 2. Neurofibromatosis type 1 (NF1) is a genetic condition that causes tumours to grow along your nerves. The tumours are usually non-cancerous (benign) but may cause a range of symptoms. Neurofibromatosis type 2 (NF2) is much less common than NF1.
Neurofibromatosis type 2 (NF2) meanwhile is a hereditary condition most commonly associated with bilateral vestibular schwannomas, also known as acoustic neuromas. People with NF2 are at an increased risk of developing cataracts in the eyes and benign skin tumors. They may have café-au-lait spots, which are light brown pigmentation, the colour of “coffee with milk”.
To fully illustrate the variety of this rare condition, we must also note NF Microdeletiom syndrome, which is a rare severe form of neurofibromatosis. Approximately 5% of NF 1 patients present with his specific strand of NF. A patient with this presentation will be missing genes connected to the NF gene and also genes around it, resulting in many learning difficulties and medical conditions.
NF Ireland relies on the dedicated support of the many individuals and companies who give their money and time on behalf of the charity. They appreciate every bit of help we can get which helps us continue their work. If you feel in the position to donate to them directly you can find all the necessary details here.
If you are interested in attending either of these events then contact the relevant parties seen in the text above. If you want to find out more about the condition, or the NF Association of Ireland, then go to their website here.