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Giant Axonal Neuropathy (GAN)

WHAT IS GAN:

Giant Axonal Neuropathy (GAN) is a recessively inherited condition that results in progressive nerve death. GAN generally appears in early childhood and progresses slowly as neuronal injury becomes more severe. As the disorder progresses, patients become quadriplegics, dependent on a feeding tube and ventilator before dying typically in the second or third decade. However, we now have some confirmed GAN cases that are milder progressing, and also have confirmed cases with straight hair. The doctors working with Hannah’s Hope Fund now suspect that CMT Type 2 patients, whose causal gene has not yet been identified, may have GAN. Hannah’s Hope Fund has a collaborator for GAN gene sequencing. For more information, visit the Doctors and Families page.

OUR MISSION:

Hannah’s Hope Fund for Giant Axonal Neuropathy, Inc. is a 501(c)(3) public charity whose mission is to raise funds to support the development of a treatment and cure for GAN, and to be the resource for doctors, scientists and families world-wide.

HOW YOU CAN HELP:

Donate Now or join the many GAN families across the Globe and help us raise funds for a treatment and cure which will save their precious lives.  Together these families have all come together to help save their children, but they need your help.  Help them raise funds toward the continued development of the gene therapy and a therapeutic drug approach.  Help Hannah’s Hope Fund spread awareness so that other families will know they are not alone.

It is with great joy & gratitude that we announce that the 1st patient has been injected with the GAN treatment!

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The above photo is part of the Miracle Worker Team after the first GAN patient was injected with the treatment at the National Institutes of Health (NIH). From left to right: Dr. Diana Bharucha, Lori Sames, Dr. Carsten Bönnemann, Dr. Payam Mohassel and Dr. Steven Gray.

Dr. Bönnemann, who is leading the NIH trial said in a UNC Healthcare interview, “That this first step is now being taken is testament to Hannah’s Hope Fund and Dr. Steve Gray’s tenacity & enormous commitment, but also to the courage of our first young patient who volunteered to receive this treatment, & others who will follow.”

Read more.

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The GAN Gene Delivery Clinical Trial is Officially Posted on the National Institute of Health’s Website and is rsz_lori_and_hannah_tu_article_2-15-15_recruiting participants!

Click to view the GAN Clinical Trial page.

The following article appeared in the Albany Times Union

By Claire Hughes, February 13, 2015

Click to read the full article.

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