Carson and Chase's Journey: Searching for a Cure

Carson and Chase Miller were diagnosed with MEPAN Syndrome in February 2018 via the NIH Undiagnosed Diseases site at Stanford University. MEPAN is a rare mitochondrial disease characterized by abnormal movements and muscle tone, meaning they can't walk or produce speech normally. The disorder is unique in that it spares cognition and affects no other organ system except the part of the brain that coordinates movement (basal ganglia). There are only 13 known MEPAN cases globally, and no proven treatments for the condition.

Despite their symptoms, Carson and Chase are happy, vibrant little boys whose bright smiles bring joy to everyone they meet. They are in school, but each day brings new challenges to learning and coping with their symptoms. Getting a diagnosis for them marked the beginning of the next stage of our journey - to find treatments and a cure for MEPAN. Our goal is to raise funds to jumpstart MEPAN research and develop innovative treatments that help Carson and Chase and the other 11 MEPAN patients around the world. 

In the meantime we have set up a website  to create more awareness about MEPAN, and you can also see a CBS news story that talks about MEPAN and the Undiagnosed Disease Program here .