Richard DiGeorge and Jo Kaur, founders of Riaan Research Initiative, with their son Riaan who was diagnosed with Cockayne syndrome in 2021. PHOTO I COURTESY OF UMASS CHAN MEDICAL SCHOOL A New York ...

Vickie Shattuck's children will never grow up. Their bodies will age long before their time. That's because in 1991, two of her four children were diagnosed with Cockayne syndrome, a rare genetically ...

Boro-mad Bohdi, 8, is running 100 miles around 100 football grounds to raise money for his older brothers, who both have ...

Cockayne syndrome is a severe autosomal recessive disorder caused by defective DNA repair mechanisms. People with the disease have much reduced life expectancy and suffer from facial deformities; ...

Bohdi Cartwright is planning to run 100 miles around 100 pitches raising awareness of Cockayne Syndrome ...