Rockaroni's NORD 7,000 Mile Rare Movement

This February, our family is joining NORD’s Rare Movement Campaign to raise awareness for rare diseases. Together, participants aim to move a total of 7,000 miles of donor-supported movement by Rare Disease Day on February 28th. There are 7,000 known rare diseases, 95% of them have no treatment. One of those is Friedreich's Ataxia. Our nephew/cousin Jacob was recently diagnosed with FA, an inherited disease that causes progressive damage to the nervous system. So far it has affected his gait and his heart, and has caused scoliosis. It's difficult to put in writing the symptoms that may or will come. I find I cannot write them with Jacob's name... People with FA may get diabetes, may have serious heart conditions. Most people with FA are wheelchair bound by their teens or early twenties. People with FA have shorter lives. Much too short. Jacob just started high school this year. He is incredibly smart and driven. He loves acting, plays viola and piano, and works hard to ace every assignment, quiz, and test at school. It is our dearest hope that research will lead to a cure, and that Jacob will have decades and decades to share his gifts with the world. You can learn more about Friedreich’s Ataxia at curefa.org. Help NORD continue to support the 30 million Americans affected by rare diseases through patient assistance and support programs, research grants, advocacy and educational initiatives.