Me, my Mum, and my Dad are raising money for Timothy Syndrome Alliance through our Sahara Desert Trek organised by Global Adventures. It is a 6 day excursion trek covering around 36-48km in the desert and includes, sleeping under the stars, watching the sunrise and summiting the largest sand dunes in the Sahara: The Chegaga. (The excursion works with local guides to promote the local economy and boost eco-tourism).

Timothy Syndrome Alliance, is an ultra-rare disease charity, focusing on improving the lives of individuals with CACNA1C-related disorders (CRDs) including Timothy Syndrome (TS) and LongQT8. The vast majority of individuals in this community are children and the charity works to support these families, improve the quality of life and promote research for them, as there is no known cure yet. Timothy syndrome raises awareness of this gene to promote early detection, diagnosis and access to care.

There are so many ultra rare diseases that are overlooked by society and the medical world, in which very little time is devoted to developing cures for them. We are raising money for Timothy Syndrome Alliance as we feel deeply that no child should have to live with these conditions alone and no parent should be scared for their child's life because there are no treatment options available. The support Timothy syndrome alliance provides to these families is crucial in improving the families quality of life.

If you are a UK tax payer, please remember to tick the Gift Aid box, as it adds 25p per pound of your donation!

Find out more about the amazing work Timothy Syndrome Alliance does by visiting there website: https://timothysyndrome.org/