This week we talk with Alexis Baker. Alexis, 25, was diagnosed with Friedreich ataxia (FA) five years ago and since then, has been using her voice and social media platforms to raise awareness for the rare disease. Alexis recently started a foundation, RiseUpFA, whose goal is to raise money to provide new walkers and wheelchairs for those in need. She currently lives in Tennessee, loves fashion and is currently planning a wedding to her fiancée.

Friedreich's ataxia is a rare, inherited disease. It damages the spinal cord, peripheral nerves, and the cerebellum part of the brain. It also leads to heart problems. This disease tends to develop in children and teens. It slowly gets worse over time. Unsteady, awkward movements and a loss of feeling due to nerve injury develop as the disease gets worse. People with this disorder may have other health problems, such as diabetes and heart disease, along with nervous system symptoms. (credits Johns Hopkins)