Cure GM1, One Run at a Time
Tax deductible
Donations will be sent directly to the Cure GM1 Foundation , with the goal of raising funds for medical research and a cure for GM1 Gangliosidosis.
This November, I will be running my second marathon, Rock N Roll Savannah, to help raise both awareness of GM1 Gangliosidosis and research funds to go towards the development of a cure through the Cure GM1 Foundation.
My Motivation
GM1 Gangliosidosis is not a disease that affects me personally, but it has forever impacted my life. When I started at Auburn University, treatment of GM1 gangliosidosis became the focus of my doctoral work. During this time, I've had the privledge of meeting the Heatherly family, who live here in Auburn. Their son, Porter Heatherly, was diagnosed with GM1, which is a rare neurodegenerative disease. Currently, GM1 Gangliosidosis is a fatal diagnosis given to around 10 to 15 sets of parents annually. GM1 is a genetic disorder that graudally destroys nerve cells in the brain and spinal cord. There is no currently treatment available for these kids that will alter the progression of the disease. The results are devastating to the entire body and result in a life expetency of only 2 to 3 years. Despite the odds, sweet Porter will be celebrating his fourth birthday in September.
Our Hope
My research group at Auburn University, in collaboration with a group at UMass, is working to find a cure for GM1 Gangliosidosis and to provide hope for all parents and children who currently have none. We are working tirelessly to get our gene therapy treatment to clinical trials. You can find more about our research here. Please help us raise money for the Cure GM1 Foundation, which supports the families affected by this disease and research for a cure.
Thank you SO much for your continuing support. Please reach out to me if you have any questions.
This November, I will be running my second marathon, Rock N Roll Savannah, to help raise both awareness of GM1 Gangliosidosis and research funds to go towards the development of a cure through the Cure GM1 Foundation.
My Motivation
GM1 Gangliosidosis is not a disease that affects me personally, but it has forever impacted my life. When I started at Auburn University, treatment of GM1 gangliosidosis became the focus of my doctoral work. During this time, I've had the privledge of meeting the Heatherly family, who live here in Auburn. Their son, Porter Heatherly, was diagnosed with GM1, which is a rare neurodegenerative disease. Currently, GM1 Gangliosidosis is a fatal diagnosis given to around 10 to 15 sets of parents annually. GM1 is a genetic disorder that graudally destroys nerve cells in the brain and spinal cord. There is no currently treatment available for these kids that will alter the progression of the disease. The results are devastating to the entire body and result in a life expetency of only 2 to 3 years. Despite the odds, sweet Porter will be celebrating his fourth birthday in September.
Our Hope
My research group at Auburn University, in collaboration with a group at UMass, is working to find a cure for GM1 Gangliosidosis and to provide hope for all parents and children who currently have none. We are working tirelessly to get our gene therapy treatment to clinical trials. You can find more about our research here. Please help us raise money for the Cure GM1 Foundation, which supports the families affected by this disease and research for a cure.
Thank you SO much for your continuing support. Please reach out to me if you have any questions.
Organizer
Jessica Kelly
Organizer
Auburn, AL
Cure GM1 Foundation
Beneficiary