Watch Justin Clark's moving speech at the 2014 Hannah's Hope Ball
Giant Axonal Neuropathy (GAN)
WHAT IS GAN:
Giant Axonal Neuropathy (GAN) is a recessively inherited condition that results in progressive nerve death. GAN generally appears in early childhood and progresses slowly as neuronal injury becomes more severe. As the disorder progresses, patients typically become quadriplegics, dependent on a feeding tube and ventilator before dying typically in the second or third decade. However, we now have some confirmed GAN cases that are milder progressing, and also have confirmed cases with straight hair. The doctors working with Hannah's Hope Fund now suspect that CMT Type 2 patients, whose causal gene has not yet been identified, may have GAN. Hannah's Hope Fund has a collaborator for GAN gene sequencing. For more information, visit the Doctors and Families page.
Hannah’s Hope Fund for Giant Axonal Neuropathy, Inc. is a 501(c)(3) public charity whose mission is to raise funds to support the development of a treatment and cure for GAN, and to be the resource for doctors, scientists and families world-wide.
HOW YOU CAN HELP:
Donate Now or join the many GAN families across the Globe and help us raise funds for a treatment and cure which will save their precious lives. Together these families have all come together to help save their children but they need your help. Help them raise funds towards the continued development of the gene therepy and a theriputic drug approach. Help Hannah's Hope Fund spread awareness so that other families will know they are not alone. Please contact Kelly Obermayer to find out how you can become a Hero for Hope.
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