OUR MISSION
Miranda’s Mission is a non-profit organization that is focused on raising money to stimulate research and promote awareness of the rare disease community, specifically WAGR Syndrome. Our hope is to engage the medical community and strengthen the relationship between physicians and families, while working to enhance the lives of those affected by
WAGR Syndrome and other rare genetic diseases.

OUR STORY

Being told your newborn daughter is legally blind, and will face a lifetime of health and developmental challenges is every parents worst nightmare. This became our reality in December of 2013 when genetic testing confirmed our then 4-month-old daughter Miranda has WAGR Syndrome. A WAGR Syndrome diagnosis means Miranda has a 57% chance of developing cancer of the kidneys before the age of 9. She has significant vision loss and other eye defects, and as she grows into adolescence, could face an array of reproductive and developmental delays…only time will tell. 
 
There are less than 450 documented cases of WAGR Syndrome worldwide – and there is currently no cure.  Due to the small number of people who are living with this syndrome there is little to no research being done and it is up to the families of the affected to campaign for their children. We started Miranda’s Mission to help increase awareness of WAGR Syndrome, but more importantly to raise funds to help stimulate research and find a cure.

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