My Legacy, Our Future: Why I'm Committed to Brain and Tissue Donation for VCP Research

By Nathan Peck, CEO of Cure VCP Disease and VCP disease patient

As someone living with VCP-associated multisystem proteinopathy (aka VCP disease) and leading the fight for better treatments through Cure VCP Disease, I want to share something deeply personal with our community. I've made the decision to donate my brain and tissue for research when my time comes—and I believe every VCP disease patient should seriously consider doing the same.

Living This Disease Every Day

I understand the challenges we face because I live them. I know the uncertainty of not knowing how my symptoms will progress, the frustration of limited treatment options, and the hope I carry for my children and future generations. As both a patient and someone working daily to advance VCP disease research, I see clearly how critical brain and tissue donation is to our collective future.

A Heartbreaking Pattern I've Witnessed

In my role leading Cure VCP Disease, I've had to face a devastating reality. In just the past five months, we've lost at least six VCP disease patients who passed away without the opportunity to collect their brain, muscle tissue, or spinal cord fluid for research. Each time this happens, I feel the weight of lost opportunities—not just for science, but for the legacy these individuals could have left behind.

This breaks my heart because it doesn't have to happen. With proper planning, every one of us living with VCP disease can make a lasting contribution to research that could benefit our children, our families, and future VCP disease patients we'll never meet.

Why Our Brains Are So Valuable to Science

As someone who talks with researchers constantly, I can tell you they are desperately asking us for brain tissue and muscle samples. We simply don't have enough biosamples to meet the demand from the scientific community.

When I think about my own brain, I realize it contains decades of living with VCP disease—information that cannot be replicated in any laboratory. My brain tissue, and yours, represents:

• How VCP disease has affected our brain regions over time

• The unique patterns of our disease progression

• Critical data to help researchers understand why our symptoms vary so much between patients

• Essential samples needed for the drug development that could help our families

  
  

Even within my own family, I've seen how differently VCP disease can present. This variability is exactly why each of our donations is so incredibly valuable.

The Partnership We've Helped Establish

I'm proud that we've established a partnership with the Maryland Brain Bank, which works directly with the National Institutes of Health (NIH). This ensures that when I donate my tissue, and when you donate yours, it will be:

• Professionally handled and preserved according to the highest standards

• Made available to legitimate researchers working specifically on VCP disease

• Used to advance scientific understanding of our disease

• Part of a larger network supporting rare disease research

  
  

What This Really Means (And What It Doesn't)

Let me be clear about something important: brain and tissue donation is NOT the same as donating your body to science. When my time comes, I can still have the funeral I want. My family can still:

• Hold a traditional funeral with an open casket if they choose

• Have me cremated according to my wishes

• Arrange the memorial service that brings them comfort

  
  

The tissue collection process is performed by medical professionals and won't interfere with any of these plans.

Why I'm Planning Ahead (And You Should Too)

Here's what I've learned: tissue collection must be arranged in advance—it cannot be done after the fact. That's why I've already:

1. Registered with the Maryland Brain Bank while I'm still able to make this decision clearly

2. Informed my family and medical team about my wishes

3. Made sure contact information is readily available for when the time comes

4. Helped my family understand the process so there won't be confusion during an already difficult time

I encourage every VCP disease patient to take these same steps.

My Legacy, Our Hope

When I think about my legacy, I don't just think about Cure VCP Disease and the work we're doing now. I think about the contribution my brain tissue could make to research that might:

• Help identify new treatment targets for my children

• Lead to better diagnostic tools for families just receiving a VCP disease diagnosis

• Contribute to understanding why VCP disease affects each of us so differently

• Support the development of therapies that could change everything for future generations

  
  

Every Sample Matters in Our Rare Disease Community

Because VCP disease is a rare disease, every single brain and tissue donation is incredibly valuable. The research community needs samples from patients like us—with different symptoms, disease durations, ages of onset, and genetic backgrounds—to fully understand this complex condition.

We cannot afford to lose any more opportunities. Every VCP disease patient who passes away without contributing to research represents knowledge that is lost forever. As someone who has dedicated my life to fighting this disease, I refuse to let my death be anything less than another step forward in that fight.

My Call to Action for Our Community

If you're living with VCP disease like me, I urge you to consider joining me in making this commitment. If you're a care partner, please have this conversation with your loved one while there's still time to plan.

Contact us at Cure VCP Disease for information about how to register with the Maryland Brain Bank, or speak with your medical team about including this in your advance directives. I'm here to help answer any questions you might have—patient to patient.

Our Greatest Gift to the Future

Living with VCP disease is hard. I know because I live it every day. But I also know that we have the power to ensure our struggles contribute to something greater. Your decision to donate, like mine, could be the key that unlocks better treatments, improved quality of life, or even a cure for future generations.

In the face of this challenging disease, our brain and tissue donations represent hope, legacy, and our ultimate gift to science. Together, we can ensure that every VCP disease patient has the opportunity to contribute to the research that will ultimately defeat this disease.

As I continue to fight VCP disease while living with it, I'm committed to making sure my legacy includes not just the work I do while I'm alive, but the contribution I'll make to research when I'm gone. I hope you'll join me.

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Nathan Peck is the CEO of Cure VCP Disease and has been living with VCP disease for over a decade. For more information about brain and tissue donation for VCP disease research, please contact Cure VCP Disease.