When Lori Sames\u2019 daughter, Hannah, was diagnosed with Giant Axonal Neuropathy (GAN), a rare disease that results in progressive nerve death, she could find only one scientist in the world studying it.\u00a0 She knew that if they could ever hope to help Hannah or another GAN patient, she needed to do something revolutionary.<\/p>\n
After overcoming the initial grief and shock through which she and her husband, Matt, could barely function (they did not even tell their families about Hannah\u2019s diagnosis), they switched gears and decided to take action.<\/p>\n
\u201cWe decided to fight. We decided not to take no for an answer,\u201d she says<\/p>\n
They set out with determination and the realization that for any disease, someone has to be the first, and for GAN it would be their Hannah.<\/p>\n
Five months later, their nascent organization, Hannah\u2019s Hope Fund, convened 22 research scientists in Boston for the first-ever symposium on GAN.
\nOver the past seven years, Lori has pushed the envelope for GAN research.\u00a0 In spring 2015, the world\u2019s first spinal cord therapeutic gene treatment is scheduled to take place, and the patient will be a GAN patient.\u00a0 Hannah\u2019s Hope helped to fund this investigational treatment.<\/p>\n
\u201cWe have to do everything we can to give Hannah a chance.\u00a0 She can barely walk with two adults holding under each arm.\u00a0 It is all crashing in on her.\u00a0 The time is now.\u201d
\nLori generously makes the time to help parents and advocates who are working on other rare diseases. \u00a0When asked how she has managed to accomplish and learn so much, she says she relies on her passion, heart, and determination\u2014her own type of Ph.D.<\/p>\n
NORD is honored to tell Lori\u2019s story as part of the 2015 Portraits of Courage celebration.<\/p>\n
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