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The Big Give Christmas Challenge

What a response!

​We knew you were brilliant but your support for the Big Give Christmas Challenge this year has been phenomenal. A huge thank you to everyone who donated and shared our campaign as well as to our pledgers and Big Give champion. Without these benevolent people, our campaign could not happen. 

In just one week, you helped us raise a fantastic £27,264.01 including Gift Aid and offline donations, you are truly amazing!!

​All funds raised will help build a community for our members and their families through a series of bespoke events where families meet others in the same position and gain support from each other. These will include counselling, wellness sessions and peer support groups, as well as fun social events for children and young people living with a rare genetic condition. 

Read the stories of those who are already benefitting from this support.

Your stories

How your money makes a difference


could provide arts & crafts equipment for children participating in activities while their parents attend our event for parents of newly diagnosed children.


could pay for an entry ticket for someone joining our Christmas family event to Gulliver's Land.


could cover the cost for a parent and their child to come along to our Christmas Experience at Glenarm Castle.


could fund a one-to-one counselling session for a parent while supporting their child who has been diagnosed with a life-limiting disease.


could pay for two families’  accommodation for our weekend event at Alton Towers.


would cover the costs for our Planting Day event where bereaved families plant saplings in memory of their lost child.