Claudia Beard

Claudia’s family joined the 100,000 Genomes Project in 2015 hoping it would be a way to finally give answers about her youngest, Trent. He had been through every and all tests they had at the time and the Project seemed to be their last hope. Unfortunately they didn’t get any findings and they remain hopeful that as science continues to advance, they will get a diagnosis for Trent and help understand more about his genetic condition. Since being on the project a Variant of Uncertain Significance (VUS) had been found, but as of yet they have not had any further information regarding the VUS. 

Claudia joined SWAN (Syndromes Without A Name) UK in 2015 and became a Parent Representative for SWAN UK shortly afterwards. Claudia found her role for SWAN was talking to medical staff and telling them our story of living with a child who is still undiagnosed. Claudia was also very lucky to be on the original Participant Panel and really looks forward to working with all the panel members. Claudia is hoping with her previous experience on the Panel and as a Parent Representative for SWAN UK, she can use the skills she has gained to support families like hers that live with a child with an undiagnosed condition and work with those in the medical world to help reduce the diagnostic odyssey for other families on this path.

Claudia has two other sons who are amazing big brothers and in her spare time loves to sew, bake and cook.