Join me as I "run" toward a cure for HSP

Growing up, I never imagined that my life would one day be divided into two chapters — the woman I was before diagnosis, and the woman I became after. For most of my life, I was a caregiver. As a mother, my children were always my greatest purpose and joy. I poured my heart into raising them, guiding them, and loving them through every season of life. My family became the center of everything I did.

That same passion for helping others led me into healthcare, where I became a nurse practitioner. Caring for patients was never just a career to me — it was a calling. I understood the importance of compassion, listening, and advocacy. I spent years helping others navigate illness, uncertainty, and healing, never imagining that one day I would become the patient searching for answers myself.

My life changed when I was diagnosed with hereditary spastic paraplegia (HSP), a rare progressive neurodegenerative disease often compared to ALS because of the way it slowly affects mobility, independence, and daily life. Hearing those words changed everything. Suddenly, simple tasks became difficult. Walking became challenging. The future I once pictured for myself looked very different.

Living with HSP has required me to grieve parts of the life I once had while learning to adapt to a new reality. There are moments of frustration, exhaustion, and fear that come with living with a disease that currently has no cure. Yet within that struggle, I have also discovered strength I never knew I possessed.

Although my life is different now, it is still filled with purpose. My experiences as a patient have deepened the empathy I once offered as a healthcare provider. I understand firsthand what it means to fight for hope, accessibility, dignity, and answers. Instead of allowing this disease to silence me, I chose to become an advocate — not only for myself, but for others living with rare diseases who often feel unseen and unheard.

Today, I volunteer with the Spastic Paraplegia Foundation, helping raise awareness and support research efforts for HSP and related disorders. I believe deeply that progress is happening, even if it comes one step at a time. Each day, researchers move closer to understanding these diseases better. Each voice raised in advocacy brings us closer to treatments, hope, and eventually a cure.