Our Story

Why PeaPot Jones Exists

PeaPot Jones exists to support individuals and families impacted by rare diseases and disabilities.

Behind every diagnosis is a family navigating uncertainty, advocacy, isolation, and resilience. Too often, these families feel unseen or unsupported—not because they lack strength, but because systems and spaces aren’t built with them in mind.

PeaPot Jones was created to change that.

We are here to foster connection, dignity, and hope through advocacy, resources, and inclusive experiences that remind families they are not alone.

How It Began

PeaPot Jones was founded by our family out of lived experience.

Like many families in the rare disease and disability community, our journey began unexpectedly—through medical challenges, unanswered questions, and the realization that support often comes most powerfully from those who truly understand the road you’re walking.

What started as a desire to help our own family quickly became a calling to help others.

PeaPot Jones grew from grassroots efforts into a nonprofit organization dedicated to supporting families impacted by rare diseases and disabilities. Through advocacy, community connection, and inclusive experiences, we work to ensure families feel seen, supported, empowered, and never alone.

Our Mission

Our mission is to serve individuals and families impacted by rare diseases and disabilities through advocacy, resources, and inclusive experiences.

We believe:

• Every individual deserves dignity and belonging

• Families should not have to navigate rare conditions alone

• Inclusion should be intentional, not an afterthought

• Community has the power to heal and strengthen

Everything we do flows from these beliefs.

Who We Serve

We serve:

• Children and adults living with rare diseases and disabilities

• Families and caregivers walking alongside them

• Communities seeking to learn, support, and include

Whether a family is newly diagnosed or years into their journey, PeaPot Jones exists to meet them with compassion, understanding, and practical support.

Looking Ahead: PeaPot Acres

PeaPot Jones is rooted in the present—but guided by a hopeful vision for the future.

PeaPot Acres represents that vision.

PeaPot Acres is an aspirational project focused on creating a fully accessible, inclusive outdoor environment where individuals and families of all abilities can experience nature, connection, and joy without barriers.

While this vision is still unfolding, it reflects the heart of PeaPot Jones: creating spaces where everyone belongs.

Join Us

PeaPot Jones is more than an organization—it’s a community.

Whether you support through donations, attend an event, share our mission, or simply learn more, you are helping build a world where families impacted by rare diseases and disabilities feel seen, supported, and valued.

We’re grateful you’re here.