Grandpa Kent's NORD 7,000 Mile Rare Movement

This February, I am 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.

I have Isaac Syndrome or Nueromyotonia which affects less than ten thousand people a year. Mine is Acquired Neuromyotomia which means I have a an antibody which affects how the nerves send a signal to the muscles. It is also known as a non-degenerative form of ALS.

There is no cure for Isaac’s but there are treatments which lessen the symptoms. Over the years I have had this disease the cost of treatment has skyrocketed. NORD has been a strong advocate for controlling drug and medical costs. 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.

It is winter and my bike is stored until the snow melts so I will be riding my basement bike. I average about 5 miles per day.