100% of net proceeds support Charlotte + Gwenyth Gray Foundation

In March of this year, both of our daughters, Charlotte and Gwenyth, were diagnosed with Late Infantile NCL Batten Disease CLN6. Batten disease is a rare genetically inherited disorder which belongs to a group of progressive degenerative neurometabolic disorders (NCLs). NCLs are characterized by genetic mutations which disrupt cells' ability to dispose of wastes, resulting in the abnormal accumulation of certain proteins and lipids within the nerve cells of the brain and other tissues of the body, resulting in progressive neurological impairment.

Because so few suffer from this presently incurable and fatal disease, there has been limited research, focus, and funding. We would like to raise funds to accelerate research in three promising treatment options: gene therapy, cellular therapy, and small molecular therapy.