Introduction

For as long as I can remember, I have been driven by a deep desire to make a difference in the lives of others. This desire grew stronger when I was diagnosed with Alpha-1 antitrypsin deficiency, a rare genetic condition that forever changed my life. That moment became the catalyst for a journey that led me to create Alpha Health Alliance. This memoir is not just about my story but about the people I hope to empower, the lives I want to impact, and the vision I carry for a better future.

The Backstory: Living with Alpha-1

My journey to a diagnosis was not straightforward—it was fraught with frustration, disbelief, and years of being unheard. Early on, I noticed symptoms that disrupted my daily life, but when I sought medical help, doctors often dismissed my concerns. Some acted as if I were exaggerating or imagining my symptoms, and I was treated like I didn’t matter.

For years, I cycled through appointments, enduring misdiagnoses and ineffective treatments. I began to feel like I was just a number in the system—a case file rather than a person. Doctors seemed confined to what they knew, rarely thinking outside their routines or questioning whether there might be a deeper issue.

It wasn’t until a compassionate doctor finally chose to think beyond the usual assumptions that my life changed. This doctor decided to run a simple test, one that could have been done years earlier. The result was clear: Alpha-1 antitrypsin deficiency. While I was relieved to finally have an answer, the years of neglect had allowed the disease to progress beyond what could have been prevented.

This experience was a harsh reminder of how vital compassion and time are in healthcare. Many doctors today seem to have lost both. When patients aren’t listened to, when we’re treated as numbers instead of people, lives are impacted. My story is not unique—many others face the same dismissive attitudes, and their conditions worsen as a result.

Navigating life with Alpha-1 has taught me resilience, empathy, and the value of community. Through support groups and personal research, I discovered a network of individuals facing similar challenges. Their stories resonated with me deeply and inspired me to think beyond my own struggles.

The Spark: Founding Alpha Health Alliance

The idea for Alpha Health Alliance came to me during one of the most challenging periods of my life. As I searched for resources and support, I realized how difficult it was to access the help I needed. I saw a gap in advocacy and education for individuals affected by rare, genetic, and chronic illnesses—a gap I felt compelled to fill.

Starting Alpha Health Alliance was not just about addressing these unmet needs. It was also about creating a platform for others to share their voices, access vital resources, and receive the support they deserve. My vision was clear: to empower and advocate for patients and their families while raising awareness about conditions like Alpha-1.

The Journey: Building the Alliance

Alpha Health Alliance is still in its infancy. With no funding and limited connections, I have poured every resource I have into this dream—stretching myself financially and personally to bring it to life. I am currently on disability, a status I fought years to obtain. I know that starting and operating this nonprofit may cost me the benefits I worked so hard to secure, but this mission is bigger than me. It’s worth giving up what little I have left to help fill the gap for others.

There have been moments of doubt, but my belief in the importance of this mission keeps me moving forward. My personal pulmonologist has recently joined the board, bringing invaluable expertise and a shared commitment to improving the lives of those we serve. Additionally, I have many others willing and waiting to join the board upon completing some predetermined milestones. I have personally set these standards to ensure we have the most professional and strong board.

Every step so far has been a learning experience, and while the road ahead is uncertain, the passion that drives this effort remains steadfast. One of the most rewarding aspects has been connecting with others who share this vision and hearing stories from individuals who feel seen, supported, and empowered because of Alpha Health Alliance.

The Vision: A Future of Empowerment and Advocacy

Alpha Health Alliance exists to ensure no one feels alone in their journey with a rare or chronic illness. Our mission is to provide education, advocacy, and support to improve the quality of life for patients and their families. We also aim to bridge the gap between patients, healthcare providers, and businesses through consulting and educational services, generating revenue to fund free patient advocacy programs.

We are aware that other nonprofits exist within this space, each contributing to the broader mission of supporting those with rare and chronic illnesses. However, Alpha Health Alliance brings a unique perspective shaped by lived experience, a relentless focus on patient-centered care, and a commitment to innovative solutions. Our approach integrates direct advocacy with resource development and consulting services to create a sustainable and impactful model. By fostering collaboration and prioritizing empathy, we aim to set a new standard for support in this field.

Looking ahead, I dream of expanding our reach, forming strategic partnerships, and making a lasting impact on the healthcare landscape. Alpha Health Alliance is more than a nonprofit; it is a testament to the power of resilience, compassion, and collective action.

A Call to Action

This memoir is a small window into my journey and the foundation of Alpha Health Alliance. But the work doesn’t end here. It’s a call to action for those who share our vision—a vision of a world where everyone affected by rare, genetic, and chronic illnesses has access to the resources, education, and support they need.

Together, we can make this vision a reality. One patient at a time, one step at a time, we can empower lives and create lasting change.