• Facebook
  • Instagram
  • Twitter

Get Support – Call 1-888-MITO-411

  • Shop
  • Events
  • Donate
MitoAction

MitoAction

Support, Education, Outreach and Advocacy for Children and Adults Living with Mitochondrial Disease

  • Mitochondrial Disease
    • About Mito
      • New Patient Kit
      • Types of Mitochondrial Diseases
      • Symptoms
      • Treatment
      • Mito FAQ’s
      • Mitochondrial Disease News
    • Diagnosis & Care
      • Diagnosing Mitochondrial Disease
      • Find a Mito Doctor
      • What is a Mito Cocktail?
      • Mito Sick Protocol
      • Clinical Trials & Studies
    • Day to Day with Mito
      • Living with Mitochondrial Disease
      • Care Management
      • Managing Your Energy
      • Traveling with Mito
      • Navigating COVID-19
    • For Medical Professionals
      • Mitochondrial Care Network
      • Monthly Expert Series
  • Fatty Acid Oxidation Disorders
    • About FAODs
      • Types of FAOD
      • Symptoms
      • Diagnosis
      • Treatment
    • FAOD Programs and Support
      • New Patient Kit
      • FAOD Support Calls
      • FAOD Experts Series
      • FAOD Resources
      • International Metabolic Conference
  • Programs & Support
    • Support
      • Mito411
      • MitoAction Memories
      • MitoPlaydates
      • MitoSocials
      • MitoChampions
      • Support Calls
      • Positive Peach Packages
    • Programs
      • Dalia’s Wish
      • Matthew Harty Camper Fund
      • Marcel’s Way Family Fund
      • MitoSantas
      • MyMito App
    • Education
      • Monthly Expert Series
      • Wondering Wednesdays
      • Energy In Action Podcast
      • Energy 4 Education
      • Patient Education Forums
      • International Metabolic Conference
    • Resources & Planning
      • Health Insurance
      • Disability Benefits
      • Mobility Devices
      • Vehicle Modification
      • Estate Planning
      • Medical Child Abuse
  • Join the Cause
    • Giving
      • Donate
      • Honor and Memorial Giving
      • Another Helping
      • Matching Gifts
      • Shop for MitoAction
      • Giving Tuesday – Ways to Give
    • Events
      • International Metabolic Conference
      • MitoAction Energy Walks
      • Sandra K. Russell Derby Day Benefit for Mito
      • Matthew Harty Camper Fund Events
    • Volunteer
      • Host a MitoSocial
      • Host a MitoPlaydate
      • Create a Fundraiser
      • MitoChampions
      • Share Your Ideas
    • Raise Your Voice
      • Take Legislative Action
      • Mitochondrial Disease Awareness Week
      • Light a Light
  • About Us
    • Contact Us
    • Connect on Social
    • Our Team
    • Meet Our Partners
    • Newsletter Signup
  • Show Search

Parents as Rare: Parenting with VCP Disease

Print Friendly, PDF & Email

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.

TravelScoot

Upcoming
Events

View All
Oct 5
6:00 pm - 7:00 pm Event Series

CPEO & Me

Oct 6
12:00 pm - 1:00 pm

Expert Series: Ultra-Rare Mitochondrial Diseases: Development Challenges and Opportunities

Oct 6
1:15 pm - 2:15 pm

Weekly Support Call

View Calendar

Expert
Series

View All

Upcoming Presentations

Oct 6
12:00 pm - 1:00 pm

Expert Series: Ultra-Rare Mitochondrial Diseases: Development Challenges and Opportunities

Nov 1
7:00 pm - 8:00 pm

Expert Series: LCHADD Retinopathy Update: Moving Toward a Treatment

View Calendar

Last Presentation

Episode 2: Wondering Wednesdays: Ask the Genetic Counselor (February 22, 2023)
Presented August 28, 2023

P.O. Box 310
Novi, MI 48376
(888) 648-6228
info@mitoaction.org

  • Support
  • Resources
  • Donate
  • Events
  • Subscribe
©2023 MitoAction. All Rights Reserved. Website by ThinkGenetic, Inc.

Privacy Policy. Terms of Use.