EPISODE 074 | It’s Problem Solving: an Inside Look at Having and Advocating for VCP Disease
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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.
Highlights
Getting to know Nathan Peck, CEO of Cure VCP Disease and a patient with the disease
Some background on the genetic disorder (multi-system proteinopathy) including different manifestations of it and symptoms
degradation of muscles (body myopathy)
early onset bone disease
frontal temporal dementia
ALS
When and how Nathan realized he had VCP Disease
How the disease impacts parents and children
The ethical and/or moral dilemma of having children with this disorder
The ins and outs of genetic testing
Nathan’s family being studied by researchers since he was young
The risks of knowing the future - why Nathan didn’t want to know results of genetic testing when he was younger
Examples of Nathan’s mindset when planning for the future - he doesn’t pass up opportunities to have no regrets
Why getting your finances in order before you get genetic testing is important
The discovery of this adult-onset disease
Life insurance and disability insurance can discriminate against preexisting conditions
The impact of genetic testing on applying for these types of insurance
Once certain information is in your medical record, the financial consequences can be devastating, when you need support the most
Looking at whether our insurance companies are good or bad
How Nathan lived his life before starting to show symptoms of VCP disease
What it’s like to not be able to be as active as he used to be
What the future looks like for Nathan and other VCP patients
Losing independence
Losing mobility
Inability to feed himself
Respiratory failure
We don’t know how fast the rate of degradation is and Nathan’s organization is trying to measure it presently
What happens when a VCP disease patient falls
The importance of ramps
What it physically feels like to have VCP disease for Nathan
The mental and emotional phases over the slow degradation of the disease
Channeling anger and emotions into organizing the scientific and patient community
How having this disease has changed Nathan’s spirituality
The importance of human intervention in making progress
Why Nathan started Cure VCP Disease, Inc.
Building credibility and trust through networking before fundraising
The importance of looking for ways to help doctors and make their job easier
Creating a patient registry
First patient conference in St. Louis, MO
The natural history study details that Cure VCP Disease is working on right now: understanding the disease in patients across a broad set and understanding the rate of degradation of the disease
The importance of building blocks in understanding
Bringing people together in the scientific community
What Cure VCP Disease knows so far about the rate of degradation and when Cure VCP Disease thinks they’ll have enough data to determine the actual rate of degradation
About Nathan Peck
Nathan Peck of southern Georgia possesses a Bachelor of Industrial Engineering from the Georgia Institute of Technology as well as a MBA and Masters of Civil and Environmental Engineering from the Massachusetts Institute of Technology.
As a patient, in January 2018, he formed Cure VCP Disease, Inc. along with a passionate group of IBMPFD patients, caregivers and researchers.
Through Cure VCP Disease, Inc. 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.
Fighting the disease everyday gives every aspect of leading the organization more purpose and meaning.
Links
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