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“Have hope! Live for today without fear of tomorrow. Know that we are working tirelessly to provide a wonderful tomorrow for all suffering with GAN.”

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What is GAN?

Giant Axonal Neuropathy (GAN) is a recessively inherited condition that results in progressive nerve death. Giant axonal neuropathy generally appears in early childhood. It progresses slowly as neuronal injury becomes more severe. Extremely kinky hair (as compared to others in the family) is characteristic of giant axonal neuropathy, but not all confirmed GAN cases have kinky hair.

Newly Diagnosed With GAN?

You are not alone! Hannah’s Hope Fund, this website, and the tribe we’ve created are dedicated to connecting families of GAN patients. Together we hold hope for the eventual cure of Giant Axonal Neuropathy (GAN).

Looking for Information on Caring For a GAN Patient?

The parents of children with Giant Axonal Neuropathy (GAN) have compiled an extensive list of situations we’ve encountered. We hope you find the information helpful in the care of patients suffering from GAN.

Scientific Advancements for GAN

In 2016, HHF successfully launched a first-in-human gene therapy! This was made possible only by the thousands of people supporting Hannah’s Hope Fund!

”Together we can achieve anything”

WHERE IS GAN?

What is Hannah’s Hope Fund? (HHF)

The heart of HHF began in 2008 with Lori Sames and Matt Sames after they received the GAN diagnosis of their youngest daughter, Hannah. After combing the globe to find scientists who had published on GAN or related pathways, HHF brought 20 research scientists together in Boston in August of 2008 for the first-ever symposium on GAN. The team of scientists that assembled prioritized gene replacement therapy as the top priority therapeutic approach in hope of getting a possible treatment to patients currently living with the disease.

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