Hi everyone. It is very important that every GAN patient have gene sequencing / mutation analysis done. There are two doctors that perform this, Dr. Flanigan in Utah, USA and Dr. Houldon in London, England. This is a blood test that can be drawn by your local care provider and sent to their labs. Each of the physicians can send the instructions for the process of drawing the blood (what color vial, how much, packing, shipping, etc.) This can take some time, up to 12 weeks. We need to be sure that we each have this done, as it tells researchers about the particular mutation. Please contact Hannah's Hope Fund for contact information for these doctors. Website: http://hannahshopefund.org Email: lorisames@yahoo.com mattsames@yahoo.com Phone #: 518-383-9053

Hello from Kansas. My son was diagnosed late October 2024, he's 7yrs old. All this is new to me, I'm researching daily and Hannah's hope foundation was my 1st email, though I have yet to receive a reply.