"Donate what you Can to cure GAN."
Rebecca Holton's Discussions
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Started this discussion. Last reply by Gigi Jun 30.
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My husband's niece, Rosie, will be 21 in July. Over the past couple of years, her ability to write by hand has diminished because her fingers have become so tightly curled, and she's quite sad about this. Are there any exercises that a GAN patient...
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- About Me
- Parent of GAN Child
- About Me:
- Hi! I'm here because my husband's 20-year-old niece, Rosie, has GAN. I'm interested in learning more about the condition and doing whatever I can to help fight it!
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Please have Rosie or her parents contact me. There's a GAN researcher in France who wants skin and blood samples from GAN patients. I would like to either speak on the phone or email with Rosie and/or her parents. I rarely have time to visit the forum, so please either call or email me: lorisames@yahoo.com
phone: 518-383-9053 I need to tell them the specifics about the details surrounding specimen samples. Please encourage them to join our mission and help us save the precious lives being taken by GAN. We need help from every family suffering with GAN. Our 2nd annual GAN scientific meeting with be at the NIH's Chemical Genomics Center in Rockville, MD. We are making great strides, but need help from both GAN patients and their families. Please know everyone involved with our organization is a volunteer, including legal counsel. There are NO paid employees. All funds raised go directly toward research, with a tiny bit of overhead, like travel expenses for scientific meetings and promotional items we sell at fundraisers (t-shirts, bracelets etc.)We are a 501C3 public charity and are registered with the NYS Charities Bureau. I would be happy to email copies of all our our legal documents surrounding our org., including our independent financial audit that was just completed. thank you, Lori Sames
Hannah's Mother and Exec. Dir., Hannah's Hope Fund for GAN
Magaen Bates (magaenbates@yahoo.com)
Lori Sames here, Hannah's mother. Please have Rosie's parents email me at lorisames@yahoo.com. It's critical every GAN patient have their GAN gene sequenced to know exactly what type of GAn mutation they have. Where does Rosie live? We have a binder we put together to present to philanthropists to see if they will help fund this research. As well, my cousin just put together a photo slideshow set to music to show at fundraisers. We need help from other GAN families and total strangers to sustain reserach already underway for a treatment for GAN. Magaen Bates is Lottyn's mother and keeps track of all the GAN patients mutations, and current status etc. Please email me and I will pass it on to Magaen.
thank you, Lori Sames
Laurie
How is Rosie doing? I have two young men, Mike almost 25 and Joey 22 with GAN. Call me when you have some time (813) 960-7273