Doctors and Families:Kevin

Diagnostic test/gene sequencing:

Hannah’s Hope Fund is happy to offer genetic testing for patients suspected of having GAN.  Gene sequencing is handled as part of the GAN Natural History Study.  However, clinically diagnosed patients who do not wish to participate in the Natural History Study will still have gene sequencing provided to them by Hannah’s Hope Fund. It is important that each biological parent also send blood, if possible. The parent’s blood is used as a control since GAN is an inherited recessive disorder. The parent’s DNA confirms the sequencing results. Please email lorisames@yahoo.com to receive consent form, collection instructions and shipping information.  Gene sequencing is required before participation in a gene therapy clinical trial is allowed. It’s important to send blood on a Monday or Tuesday to make certain it arrives before the weekend. HHF will also pay to have unaffected siblings tested to see if they are carriers, if the parents wish and consent. US patients – For US patients who are suspected to have GAN, and have the undeniable kinky hair, blood can be drawn all at once as part of the GAN Natural History Study, (if they wish to participate in the natural history study).

US patients:

For US patients who are suspected to have GAN, and have the undeniable kinky hair, blood can be drawn all at once as part of the GAN Natural History Studay (if they wish to participate in the natural history study).

International patients:

For International patients, and patients who do not have the typical kinky hair, please email LoriSames@Yahoo.com to receive consent form, collection instructions and shipping information.  The mutation needs to be confirmed to avoid expensive, unnecessary travel to the GAN Natural History Study.


All website content is the opinion and observation of parents, not medical professionals. Please consult your medical doctor for medical advise.