I am putting together a GAN registry for the Sames Famiy. Will you please send me all of your contact info. name, numbers, email, home address, full name of GAN patient and birthdate, and mutation if it has been sequenced.
Hi Azzie. Lori Sames, here, Hannah's mom, from Hannah's Hope Fund. I hope you are well. Have you had your GAN gene sequenced yet? Please do. I bet Dr. Pascale Bomont, France, would do it for you when she returns from maternity leave. What brand, and what vitamins do you take? I recall you take quality vitamins, but can't recall what. Hannah is doing pretty well, but has more difficulty with toe drop, but still doesn't have to wear an AFO. She wears custom orthotics and an SMO a few hrs. a day. She does PT 3 times a wk., and OT twice. Plus we do fun things at home to keep her strength. What advice do you have for us, the parents of a 5 yr. old with GAN. Thank you Azzie... live for the moment and reach from your dreams---Lori
Hi Azwhayn,
Nathan, my son thinks you are amazing - as you can drive a boat. He has been in a wheelchair since the age on 3. Can i ask what has the condition limited you to?
My son is only 14 and is fully dependant on me or someone to do all for him.
thanks Roz
Azzie, glad to have you on board! We are working very hard with Stanford University right now. I sent them $10,000 to colonize the GAN mice that Dr. Yang has in her lab. That's just the start. We are going to provide them about $500,000 annually to get a cure in 2-5 years. If you can direct people to our website, our PayPal button allows supporters to donate online. Stay with us, bro. We are going to beat this thing.
"Donate what you Can to cure GAN."
Azwhayn McLean's Comments
Comment Wall (9 comments)
You need to be a member of Giant Axonal Neuropathy to add comments!
Join this Ning Network
Magaen Bates (magaenbates@yahoo.com)
Nathan, my son thinks you are amazing - as you can drive a boat. He has been in a wheelchair since the age on 3. Can i ask what has the condition limited you to?
My son is only 14 and is fully dependant on me or someone to do all for him.
thanks Roz
yeah im ok so far!
HAVE A GOOD SUNDAY
My name is Matthias. I m 31 years old.
i also have GAN. I am in Germany.
Nice to hear from you. I've heard a lot about you from Magaen. May I have your e-mail address?
Mary
Hey, how have you been?
Melissa
Welcome to the Forum. I am so glad you joined.
Magaen
Welcome to
Giant Axonal Neuropathy
Sign Up
or Sign In
About
Badge
Get Badge
© 2009 Created by Matt Sames on Ning. Create a Ning Network!
Badges | Report an Issue | Privacy | Terms of Service