Just in time for Father’s Day. We just received a new shipment of Awareness wristbands that are just waiting to go out there and do some good. They are 4.00 each or 6 for 20.00. To see the PCDH19 wristbands and other awareness clothing and accessories, please check out our PCDH19 Alliance Store
Awareness Wristbands Are Back
Who We Are
Our mission is to improve the lives of children and families affected by PCDH19 Epilepsy. The PCDH19 Alliance focuses on raising and directing funds to scientific research with the goal of finding better, more effective treatments and, ultimately, a cure. We’re also here to provide information and support to affected families, assist research efforts and ensure that no family suffers without a diagnosis & the best medical treatment.
PCDH19 Epilepsy is a condition with a wide spectrum of severity in seizures, cognitive delays and other symptoms, which are all caused by a mutation of the PCDH19 gene on the x chromosome. Males with the mutation, who will be largely unaffected, will pass the mutation onto 100% of their daughters and none of their sons. Women with the mutation have a 50% chance of passing it to their daughters and will pass it to 50% of their sons. It now suspected that 1 in 10 girls that begins having seizures before the age of 5, may have PCDH19 Epilepsy. We are unsure of the incidence in boys, as we need more data. Recently, scientists have discovered some unaffected females and are studying to learn what is protecting them from the disorder. Mosaic males are also affected, but so far very few males have been diagnosed.