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This episode is Nathan Peck’s story - Nathan is such an engaging and interesting guest - he’s a dad, husband, son, and nephew, but also a patient advocate, CEO, and patient of Cure VCP Disease, a nonprofit organization dedicated to organizing the patient population and scientists and bringing them together to make progress on treating and curing the disease.

We start out with Nathan explaining some of the science behind VCP disease, including mutations of a specific gene - the Valosin Containing Protein gene, hence the name, VCP disease.

This disease can manifest in one or a combination of ways, including muscle degradation, early onset bone disease, frontal temporal dementia, and ALS. This particular disease is commonly misdiagnosed as limb-girdle muscular dystrophy, myositis or other myopathies.

It’s an adult-onset disease that definitely runs in the family.

We talk about Nathan’s family being researched when he was growing up because of the prevalence of the disease in his family, the ethics of having children, the role of genetic testing, and the importance of getting your financial affairs in order before you get genetic testing.

Then Nathan gets really personal, opening up about what it physically feels like to have VCP disease, the mental toll of having the disease, and channelling those emotions into finding answers.

We talk about what the future looks like - for Nathan, it looks like everything from not being able to hold a pizza pan to being mindful of curbs when walking on the street - and the importance of human intervention in changing the future. It looks like grappling with losing independence. But it also looks like hope for others after Nathan. Perhaps Nathan too.

This episode not only educates you on a rare disease, but gives you an inside look at the thoughts, feelings, and efforts of a patient doing his best to advocate for himself and others.

If you or someone you know is struggling with symptoms including but not limited to abnormal muscle fatigue, bone pain, or memory issues, this episode is worth a listen. Of course, this episode is worth a listen anyways, because not only is it packed with resources and advice on being your own health advocate, but you’ll be inspired by Nathan’s passion, drive, energy, and business expertise, to start doing whatever it is you’ve been putting off.

You get perspective on tomorrow and the importance of taking opportunities that present in your life.