• I offer a FREE Initial Consultation
• I offer TeleAdvocacy Service
• My geographical area of practice is We provide virtual advocacy, empowerment and educational programs as well as Virtual and In-person Keynote presentations.

For over six years, I’ve served as a rare disease patient advocate — but my advocacy journey began long before I claimed that title. Living with Ehlers-Danlos Syndrome, Myasthenia Gravis, and comorbidities such as POTS and CRPS, I learned to navigate a complex and often unyielding medical system. Along the way, I discovered that self-advocacy is not just a survival skill — it’s a life-changing tool that can open doors to care, dignity, and independence.

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My Patient Advocacy Story

My journey into patient advocacy was born out of sheer necessity — an unplanned path that has become inseparable from my identity and purpose. What began as a grueling diagnostic odyssey and a desperate fight for access to life-saving treatments soon transformed into a lifelong mission. I never set out to be an advocate, but the reality of living with multiple complex conditions — including Ehlers-Danlos Syndrome (EDS), Myasthenia Gravis (MG), and autoimmune comorbidities such as Postural Orthostatic Tachycardia Syndrome (POTS) and Complex Regional Pain Syndrome (CRPS) — left me no choice but to learn how to speak up, fight for my needs, and, ultimately, help others do the same.

In the beginning, my focus wasn’t on the intricate dance between patients and medical professionals or navigating the maze of community-based programs. It was about survival. I vividly remember one defining moment: sitting on the floor, exhausted and short of breath after yet another strenuous appeal for an oxygen concentrator. In that moment, I realized this wasn’t just about me — it was about the countless others too weary, too overwhelmed, or too unheard to fight for themselves. If someone with my background in political and legal advocacy was struggling, how much harder must it be for those without that foundation?

For the past six years, I have served as a rare disease patient advocate — speaking not only for myself but for an entire community facing similar struggles. As both a parent and someone who has worked closely with youth with special needs, I have seen the spectrum of challenges families face — from school-based accommodations to medical care to social inclusion. My own life has been a constant cycle of navigating new symptoms or setbacks just as stable ground seemed within reach. These experiences have forged my resilience, deepened my compassion, and sharpened my understanding of what it truly means to live with chronic illness or disability.

I have learned that advocacy is not a one-time effort; it is an ongoing journey. Today, that truth is more personal than ever as I face the inability to access a desperately needed surgery due to complications from my underlying conditions. It is yet another reminder that for many of us, getting the medical care we need is a fight that never ends.

But here is what I want everyone to know — whether you are living with EDS, MG, another autoimmune condition, or any disability at all: learning to advocate for yourself is one of the most powerful, life-changing skills you can develop. Advocacy is not just about today’s battle. It is about shaping a lifetime of better care, greater independence, and stronger community support.

My story is not just about the battles fought and won. It is about turning personal adversity into collective strength. It is about using my voice to amplify others, ensuring no one has to walk this road alone. And it is about building a world where every voice is heard, every need is met with dignity and compassion, and every individual is empowered to thrive — no matter how complex their journey may be.