May. 16, 2015
Posted by Jennifer Huron
When Lori Sames’ 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. She knew that if they could ever hope to help Hannah or another GAN patient, she needed to do something revolutionary.
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’s diagnosis), they switched gears and decided to take action.
“We decided to fight. We decided not to take no for an answer,” she says
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.
Five months later, their nascent organization, Hannah’s Hope Fund, convened 22 research scientists in Boston for the first-ever symposium on GAN.
Over the past seven years, Lori has pushed the envelope for GAN research. In spring 2015, the world’s first spinal cord therapeutic gene treatment is scheduled to take place, and the patient will be a GAN patient. Hannah’s Hope helped to fund this investigational treatment.
“We have to do everything we can to give Hannah a chance. She can barely walk with two adults holding under each arm. It is all crashing in on her. The time is now.”
Lori generously makes the time to help parents and advocates who are working on other rare diseases. When asked how she has managed to accomplish and learn so much, she says she relies on her passion, heart, and determination—her own type of Ph.D.
NORD is honored to tell Lori’s story as part of the 2015 Portraits of Courage celebration.