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 even 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 wasn’t always easy—it was filled with frustration and challenges. For years, I struggled with symptoms that disrupted my life, but when I sought medical help, I often felt unheard. Many doctors dismissed my concerns, and I began to feel as though I was just a case file in the system.

Thankfully, a compassionate doctor finally chose to think beyond the usual assumptions and ran a simple test. The result was clear: Alpha-1 antitrypsin deficiency. While it was a relief to finally have an answer, I couldn’t help but think of the many others who face similar challenges—being dismissed and left searching for answers. It was a stark reminder of how vital compassion and time are in healthcare.

Living with Alpha-1 has taught me resilience, empathy, and the value of community. But it has also come with struggles that I still face every single day. My health has declined, and there are moments when the weight of this condition feels overwhelming. Some days, even the simplest tasks can be exhausting. Yet, in those moments, I find strength in knowing that I am using my experience to help others. Even on the hardest days, it is refreshing and fulfilling to know that I can make a difference.

The Spark: Founding Alpha Health Alliance

The idea for Alpha Health Alliance emerged during a particularly difficult time. 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—and I felt compelled to fill that gap.

Starting Alpha Health Alliance wasn’t just about addressing 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 became clear: to empower and advocate for patients and their families while raising awareness about conditions like Alpha-1.

Even though my health makes this journey challenging, I put every ounce of my energy into this labor of love and hope. This is more than just an organization—it is my purpose, my way of turning pain into progress, and ensuring that no one else feels as lost or unheard as I once did.

The Journey: Building the Alliance

Alpha Health Alliance is still growing, and every day we are making strides toward fulfilling our mission. We are fortunate to have dedicated people supporting us as we expand, including my personal pulmonologist, who has joined the board, bringing invaluable expertise and a shared commitment to improving the lives of those we serve. Many others are also excited to join the board once we reach certain milestones.

Though we are still in the early stages, we are building a solid foundation and continuously improving. We are focused on creating a professional and strong team to carry our mission forward, and the passion behind this effort remains unwavering.

The Vision: A Future of Empowerment and Advocacy

Alpha Health Alliance is dedicated to ensuring that 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.

While there are other nonprofits in this space, Alpha Health Alliance brings a unique perspective—shaped by lived experience, a patient-centered approach, and a focus on innovative solutions. Our model integrates direct advocacy with resource development and consulting services, ensuring long-term sustainability and meaningful impact.

As we grow, we are expanding our reach, forming strategic partnerships, and setting a new standard for support in this field. Our goal is to make a lasting impact on the healthcare landscape, and we are excited about the future.

A Call to Action

This memoir is a glimpse into my journey and the foundation of Alpha Health Alliance. But our work is just beginning, and we invite you to join us in making our vision a reality. Together, we can create a world where everyone affected by rare, genetic, and chronic illnesses has access to the resources, education, and support they need.

Even on the toughest days, when my own health makes things difficult, the drive to help others keeps me going. It reminds me that our struggles can fuel change, and that no matter how hard things get, we can still make a difference.

As we continue to grow and evolve, we ask for your patience and understanding. Our commitment to empowering lives and creating lasting change remains strong, and we are excited for the future ahead. One patient at a time, one step at a time, we can make a difference.