This year I will be taking part in the VHI Women’s Mini Marathon in aid of The Cure Blau Syndrome Foundation, inspired by Fiadhna, one of the children in my pre-school class.

Blau Syndrome is a rare auto-inflammatory condition, affecting fewer than one in one million, often beginning in early childhood. The condition causes chronic inflammation, affecting the skin, joints, eyes and in some cases internal organs. For children and families, it means years of medical appointments and treatments.

I have made a GoFundMe as, The Blau Syndrome Foundation is American Based therefore does not appear on the iDonate Fundraising Platform. However, as the condition is so rare, it is one of the only charities advocating for Blau Syndrome and the children and families affected in Ireland.

In June, Fiadhna and her family will travel to California for the International Blau Syndrome Summit. All money raised will go towards research for progressive treatments and a potential cure, supporting families in navigating this lifelong condition and continuing to raise awareness about Blau Syndrome.

All donations are greatly appreciated and by supporting a charity affecting one in one million, it will in turn, support a one in a million little girl.

All money raised will go to The Cure Blau Syndrome Charity. You can learn more on their official website https://www.curebs.com