I am running the Brighton marathon in April to raise money for Kleefstra syndrome UK as my close friends are personally affected by this.

Our friends daughter Annie was diagnosed with Kleefstra syndrome, a rare syndrome just after her second birthday after genetic testing at great Ormond street. When her parents were given her diagnosis they were told they would be become the experts in her syndrome as it’s relatively unknown by medical professionals. After this diagnosis their first steps were to contact Kleefstra UK where they were able to speak to volunteers who have lived experience of Kleefstra. The charity only runs through the hard work of these volunteers. Any money raised goes directly to the charity and can support meet ups for families living with Kleefstra.

As this is such a rare syndrome, it would be great to raise some awareness as well as some well needed funding for the charity who help the families affected.

Thank you for any donations!