I’m fundraising in support of my grandchild, Reggie.
101 km
of 80 km
So far I’ve completed 101 Ks for Kids this August
Why I’m Doing Ks for Kids
I’m walking 100km this August to raise funds for the Children’s Medical Research Institute in support of my beautiful grandson Reggie who is living with an extremely rare form of Congenital Disorder of Glycosylation (CDG) known as ALG1-CDG. This is a genetic metabolic disorder that is so rare that fewer than 100 cases have been confirmed in published medical literature worldwide.
CDG is a life-limiting and unpredictable condition with no cure. Families live with ongoing uncertainty, and much of the focus is on managing symptoms, supporting comfort, and prioritising quality of life — making the most of every good day, every small win, and every moment together. At present, Reggie is living with Epilepsy, Cortical Vision Impairment, Hypotonia (low muscle tone) and Global Developmental Delays.Â
1 in 20 Aussie kids are born with a genetic disease or birth defect. The Children’s Medical Research Institute supports scientists who are working today to find cures for tomorrow for kids like Reggie. Your donation will help keep labs running, research advancing, and hope alive for kids who need it most.
I’m walking 100km this August to raise funds for the Children’s Medical Research Institute in support of my beautiful grandson Reggie who is living with an extremely rare form of Congenital Disorder of Glycosylation (CDG) known as ALG1-CDG. This is a genetic metabolic disorder that is so rare that fewer than 100 cases have been confirmed in published medical literature worldwide.
CDG is a life-limiting and unpredictable condition with no cure. Families live with ongoing uncertainty, and much of the focus is on managing symptoms, supporting comfort, and prioritising quality of life — making the most of every good day, every small win, and every moment together. At present, Reggie is living with Epilepsy, Cortical Vision Impairment, Hypotonia (low muscle tone) and Global Developmental Delays.Â
1 in 20 Aussie kids are born with a genetic disease or birth defect. The Children’s Medical Research Institute supports scientists who are working today to find cures for tomorrow for kids like Reggie. Your donation will help keep labs running, research advancing, and hope alive for kids who need it most.
