A big thank-you to teens Robi and Lucas who raised more than a whopping £2,000 to help CAN continue our work. Both boys have rare anaemia diseases that make them more tired so to participate in long walks is really admirable and CAN is so grateful to them both.
Robi, who has a rare anaemia called Congenital Dyserythropoietic Anaemia Type 1 (CDA-1), organised a group walk and raised over £1,000 for CAN. Robi’s mum, Resina, says: “Robi wanted to fundraise for CAN so they would be able to continue funding fantastic events such as the family day and CDA conference. He walked over eight miles and had a great response, raising well over £1,000. We are very proud of him!”
Lucas has Pyruvate Kinase Deficiency and this year in honour of Rare Disease Day, he hosted another ‘Star Blood’ walk around Ivinghoe Beacon to raise both awareness of rare diseases and valuable funds for CAN. His mum, Emma, says: “Now he’s getting older Lucas recognises the importance of patient advocacy with a rare condition; he’s so keen to raise awareness for himself and future diagnosed PKD children. We are of course, incredibly proud of all his efforts!”