Rare Leader: Nathan Peck, CEO, Cure VCP Disease

The Basics
Name: Nathan Peck

Title: Founder / CEO

Organization: Cure VCP Disease

Social Media Links:

Disease focus: IBMPFD stands for inclusion body myopathy associated with Paget’s disease of bone and/or frontotemporal dementia. IBMPFD is a rare adult onset genetic disease caused by any one of several possible mutations in a gene called valosin containing protein (VCP or p97). The clinical features include one or a combination of the following: myopathy, early–onset Paget’s disease of bone, and premature frontotemporal dementia. IBMPFD is progressive and death typically occurs in the 50s and 60s from respiratory and cardiac failure.

Headquarters: Americus, Georgia

How did you become involved in rare disease: My mother and aunt both died from VCP disease and I have two uncles with VCP disease. I was diagnosed with the disease in 2015. I created Cure VCP Disease in January 2018.

Previous career: Executive leader in various supply chain industries.

Education: Bachelor’s degree in Industrial Engineering, Georgia Institute of Technology; Master’s degree in Civil and Environmental Engineering, Massachusetts Institute of Technology; Master’s degree in Business Administration, Massachusetts Institute of Technology

The Organization
Organization’s mission: Cure VCP Disease was formed to drive efforts to cure diseases related to mutations of the valosin containing protein gene. This includes IBMPFD. 

Organization’s strategy: Our strategy is to provide global education and awareness of VCP diseases to doctors, researchers, investors, patients, caregivers and the general public; to develop and maintain a global patient registry of VCP disease patients; to develop and maintain a fundraising vehicle to support awareness and education efforts; to collaborate with other global organizations and entities that are promoting a cure for diseases with symptoms similar to VCP diseases; and to sponsor, host and/or participate in events and activities that promote efforts to cure VCP diseases.

Funding strategy: We have been blessed with some incredible individual donors, many of whom matched through their companies. We had no initial plan, other than that our credibility and performance as an organization would drive donations, but we are actively developing our fundraising strategy.

What’s changing at your organization in the next year: We are a young organization, less than two years old, that is now maturing into the next phase of patient advocacy. We have diversified our Board with more non-patients and we have begun submitting applications for grants and hope to soon provide grants for research.

Management Style
Management philosophy: We are still so small that we all have to be doers. I delegate where possible, but with my leadership and professional experience, I have to set the example.

Guiding principles for running an effective organization: We must “make” the time for others and not try to “find” the time. As a patient with a debilitating disease, time is not our friend and we must operate with a sense of urgency.

Best way to keep your organization relevant: I am a big believer in talking with as many people as I can and trying to find ways to learn from each other.   We cannot be afraid to try things.  We are going to fail and make mistakes, but we must continue to try new things and implement a better idea next time.

Why do people like working with you:  I am resourceful, unafraid, and results driven.

Mentor: I worked at Dell for eight years to start out my career and worked with some of the brightest and smartest people I have ever met. We were an organization that tried things, failed, learned from our mistakes, tried again, and kept learning and improving. We had to learn how to be resourceful.

On the Job
What inspires you: Results and seeing hope in our patient population.

What makes you hopeful: Meeting and learning from other rare disease patient organizations’ leaders makes me hopeful.

Best organization decision: Moving quickly to get a patient registry. In less than six months we had a registry set up with CORDs. That gave us a lot of credibility with doctors and researchers.

Hardest lesson learned: It is discouraging when some of our identified patients have given up.  Some do not want to participate and they want to hide from the disease.  They just want to be left alone, but we as a small patient population all need to work together to find a cure.  It’s personally hard for me to understand why patients would not take the twenty minutes to complete the patient registry when this is the key to launching cures and treatments for our disease. 

Toughest organization decision: We started in February 2018. We recently changed some of our board members. Two of them were patients. They had made contributions in the past, but they weren’t able to continue because of their disablement due to the disease. That was tough to move on without them.

Biggest missed opportunity: Being too ambitious in my career to jump jobs. Maybe should have slowed down slightly, but there was always a clock in my head. Most patients show symptoms in their late 40s and about the time I went to college, I saw how this disease was affecting my mother. I felt the clock was running. I wanted to make the most of the time I had.

Like best about the job: Challenging norms and getting results. Networking and meeting all the amazing warriors in the rare disease world!

Like least about the job: Spending time away from my family.

Pet peeve: Paralysis by analysis—when people want to sit and talk about doing things rather than doing things.

First choice for a new career: I don’t think in that regard anymore.

Personal Taste
Most influential book: Freakonomics: A Rogue Economist Explores the Hidden Side of Everything by Steven D. Levitt and Stephen J. Dubner – data can be used anywhere to understand a population or decisionmaking

Favorite movie: The Shawshank Redemption – “Get busy living or get busy dying.”

Favorite music: 80’s and 90’s

Favorite food: BBQ

Guilty pleasure: I love chips and Coca-Cola

Favorite way to spend free time: Playing video games with my sons, watching basketball and football, and traveling