The future is easy to ignore when you assume you'll stay healthy. Nathan Peck doesn't have that option.

Diagnosed with VCP disease, a rare inherited condition that can cause progressive muscle weakness, bone disease, dementia, and ALS-like symptoms, Nathan lives with the knowledge that his independence will likely diminish over time. 

But instead of retreating, he has spent the last several years building an organization dedicated to advancing research, supporting patients, and accelerating the search for treatments.

Nathan shares what it actually feels like to live with a progressive genetic disease and why he believes action matters more than fear.