You need to register first.
Once you register, log in and click nominate. You may cut and paste the responses below which Lori’s cousin drafted, and Lori revised and approved.
THANK YOU for doing All You Can to Cure GAN!
Nominee Contact Information
Hannah’s Hope Fund
Contact person: Lori Sames
Title :Executive Director
Organization Web Site:
19 Bluejay Way
Hannah’s Hope for GAN was formed to find a treatment and/or cure for Giant Axonal Neuropathy. GAN is a rare genetic disorder that slowly takes away a child’s ability to walk, use one’s hands, speak, swallow and is terminal usually by the time a child reaches their late teens. It is a family and friends driven 501C3 Public Charity, dedicated to funding research for a treatment and/or a cure for this horrible disorder. It is a completely volunteer organization with no paid employees.
Overview of Nominee’s Volunteer Service
In March of 2008, Lori Sames learned that her daughter, Hannah, then age four, had Giant Axonal Neuropathy. GAN a rare genetic disorder that slowly takes away one’s ability to walk, use one’s hands, speak, swallow and is terminal usually by the time the child is in their late teens. Lori was told there was no cure and no hope for her daughter. After grieving for a few days, she and her husband, Matt, said, “Someone has to be the first person to beat this disease, and it is going to be Hannah.” By August of 2008, Hannah’s Hope for GAN, a 501c3, was formed and hosted the first International Symposium on GAN in Boston, MA. Professionals from around the globe joined forces and agreed to work together to find a treatment. In an incredibly short amount of time, a treatment has been found, and a clinical trial is being planned. Researchers hope to begin testing in human children by 2011.
Community Needs and Solutions
GAN is what is referred to as an “orphan disease”, meaning it impacts less than 200,000 Americans. Therefore, it doesn’t attract the attention of Pharmaceutical nor Biotechnology companies. There was no organization prior to HHF, which was pushing for a treatment, so the research received very little attention or funding. Lori Sames, as Executive Director of HHF, has been the driving force behind organizing researchers to work together to find a treatment and cure.
Prior to HHF, when parents were told that their child had GAN, they were handed a death sentence. Since Lori refused to accept that sentence for her child, not only will Hannah beat this disease but other children who currently have the disease and any child who gets it in the future will now have a treatment. The impact is not only to those with GAN. The same treatment may be used to treat other genetically based neurological disorders.
Lori insisted on shifting the paradigm that forces researchers to compete for funding and work independently. By bringing them all together at the first International Symposium for GAN, she was able to convince them to work in conjunction to find a treatment.
In just over 2 years after receiving the diagnosis, Lori organized HHF, hosted the symposium, focused a team of researchers’ efforts to find a treatment and start a clinical trial and lead a family and friend grassroots organization to raise nearly two million dollars to fund this therapy development effort and the upcoming clinical trial.