Parents As Rare - Parenting with VCP Disease

PARENTS AS RARE - EPISODE 036

Parenting with VCP Disease - Nathan Peck

Nathan Peck is a husband, dad, VCP patient and the CEO of Cure VCP Disease. Through this organization, he is committed to bringing together patients, caregivers, researchers, pharmaceutical companies, other non-profits and investors to identify treatments and ultimately a cure for this rare, genetic disease.

EPISODE HIGHLIGHTS

What is VCP Disease?

VCP disease is caused by a mutation in a gene called Valosin Containing Protein (VCP). I grew up with VCP, my mom and aunt are deceased from it and I have two uncles still living with the disease. VCP is a Multisystem Proteinopathy (MSP1) which means it affects multiple systems in the body, Inclusion Body Myopathy, Paget's Disease of Bone, and / or Frontotemporal Dementia. VCP can also cause disorders such as Amyotrophic lateral sclerosis (ALS), Parkinsonism or Charcot-Marie-Tooth disease. There's not a full understanding of the disease yet, so our focus is on finding families affected. We started Cure VCP Disease to organize the patients and science and facilitate collaboration.

How has your family history changed the trajectory of your journey?

VCP has been the black curse of the family and we knew there was a chance of developing systems at some point. Once I started experiencing systems, I decided to engage and do what I could do to influence change. With the availability of information and accessibility of the internet and social media, it's easier to get involved and learn. There's not going to be a fix for me, but there can be for my kids.

As a dad, thinking back to your diagnosis, what do you remember most?

I remember trying to keep it from my kids because we assumed they weren't old enough to deal with it. We realized later that we needed to be more transparent about what was going on.

How have you adjusted the activities you do with your kids and how do you interact with them now with your limitations?

We play games and spend time as a family. I'm just going to progress forward and keep making memories with my kids. My goal is to do as much as I can while I can.

What would you say to a parent with a rare disease or chronic disease?

Only you know what you can do, but don't settle. Keep pushing and adjust where you have to. Find a balance and care for yourself so you can be present for your kids and those moments that matter.

RESOURCES MENTIONED

Permission to Feel by Marc Brackett Ph.D.

https://www.amazon.com/Permission-Feel-Unlocking-Emotions-Ourselves/dp/1250212847

TravelScoot

https://www.travelscoot.com/

FOLLOW ADAM JOHNSON

Twitter @RareDiseaseDad

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LinkedIn

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