As we continue to reach out to other GAN families, we are convinced Hannah is likely the youngest child ever diagnosed, just 3 weeks following her 4th birthday.  Since GAN is an “orphaned genetic disorder”, very little funding, and thus little research and awareness of this disease has occurred.  While the genetic aspect of GAN is known, even within the medical community very little information about the disease GAN is known.  Families struggle getting the proper medical care for their children because there is so little information available.  Our website www.Hannahshopefund.org will be the portal for GAN to help families better understand the disease and get better healthcare for their children.  Families are no longer alone in this struggle.  We are uniting and it is so very comforting.  As our website develops, we will have a GAN patient registry so we can assist newly diagnosed families and make certain each new child, or young adult, diagnosed has a mutation analysis performed.  It’s important to know what type of mutation your child has because there are drugs currently being developed for other degenerative genetic disorders, that are specific to certain types of mutations, that may treat GAN.  We want to be able to contact patients for clinical trials. 

We need to raise awareness about this horrible disease so children don’t wait 9 years for a diagnosis like Lottyn, from Georgia.  Lottyn is now 10 years old.  He is a smart, happy boy who is so very lucky to have Magaen as his mother and strongest advocate. He uses a walker and is starting to have difficulties speaking and swallowing.  To view Lottyn's video story, click on http://www.youtube.com/watch?v=B5chG6fdAEo .

We’ve also connected with Alan in Alabama.  Alan is 7 and 1/2 and was diagnosed 2 years ago.  He uses a walker, and has to pick up his legs with his arms in order to take a step forward. His arms are now going numb. 

Piumi is a beautiful 22 year old woman who was born in Sri Lanka.  She is wheelchair bound and can no longer use her computer due to upper extremity paralysis.  She lives in Florida with her parents.

We are in contact with a 17 year old in New Zealand.  He was diagnosed when he was 14 and has spent hundreds of hours searching for treatment.

I’ve spent hours on the phone with Mary, from Florida, who has 2 grown boys with GAN.  Joey is 21 and Mike is 24.  These are smart young men who have had almost everything taken from them by this horrible disease.  Joey, the younger of the two can’t move anything but his head.  He is getting a new electric wheelchair that he’ll be able to operate with his chin.  His mother and father have worked tirelessly to get their boys the best equipment throughout the years to keep them as independent as possible.  Mike still has some upper mobility and can work at his computer.  Both boys have tracheotomies because they were having trouble breathing when their vocal cords became paralyzed.  Both boys have feeding tubes, because their ability to swallow has been severely compromised.  Joey is on a ventilator.  This is not the life these young men should be living.  They should be at college, have girlfriends, and have dreams…. To view their video story, please click on http://www.youtube.com/watch?v=B5chG6fdAEo . 

Please donate generously to help us find treatment and a cure.

If there are any GAN patients out there who are nearing the end of their fight, please consider having an autopsy performed by a neuropathologist.  Please make certain Hannahshopefund.org gets a copy of the autopsy report.  Scientists still have no idea the full impact this disease has on the central nervous system and could greatly benefit from this information.  Please, please do this for the other children who still have a chance for treatment and cure.  Hannah’s Hope Fund will pay for the autopsy if there’s a fee.