My journey as a rare disease mom began with a single diagnosis that changed everything. Overnight, I became not just a parent, but a full-time caregiver, advocate, and researcher. This role requires resilience, patience, and a willingness to adapt to life’s unexpected challenges. Through the highs and lows, I’ve discovered the power of simplicity—focusing on what truly matters and letting go of what doesn’t. It’s this clarity that has guided me through the complexities of living with a rare disease diagnosis in the family, and it’s the foundation upon which I’ve built my mission.
As the founder of the Raging Raymond Foundation, a non-profit organization dedicated to rare disease advocacy, I have poured my heart into creating resources, raising awareness, and building connections for families like mine. I understand firsthand the emotional and practical challenges that come with rare disease diagnoses, which is why I’ve worked tirelessly to provide the support and information that families need to navigate their journeys. From organizing support groups to partnering with medical professionals and researchers, I aim to ensure that no one faces this path alone.
In addition to my advocacy work, I’m deeply passionate about advancing research in the rare disease field. I actively engage with scientists, clinicians, and other advocates to promote studies that could lead to better treatments, therapies, and ultimately, cures. Through my research efforts, I strive to connect families with the most up-to-date information and ensure that their voices are heard in the research community. By bridging the gap between patients and researchers, I hope to create an environment where every discovery is fueled by the experiences of those living with these conditions.
Throughout this journey, I’ve also found a new path for myself: returning to school after taking a break to raise my children. This decision wasn’t easy, but it has been incredibly rewarding. As I work toward completing my bachelor’s degree, I am focused on not only finishing my education but also building the foundation for a future where I can contribute even more to the rare disease community. With a master’s degree on the horizon, I am committed to furthering my expertise so that I can continue advocating for families and contribute to the ongoing fight for better treatments and cures. My sights are set on a doctorate, and I’m determined to equip myself with the knowledge and skills to make an even greater impact.
But beyond the degrees, my work and passions are rooted in the desire to build a more compassionate and informed world. I am driven by the stories of families who have faced the same struggles, and I’m fueled by the idea that we can create real change through collaboration, knowledge-sharing, and collective action. I believe in the power of community—the strength that comes from people coming together, sharing their experiences, and supporting one another.
This journey isn’t just about personal growth—it’s about shaping a future where we can ensure that every family impacted by rare disease has the resources, support, and hope they deserve. It’s about advocating for a world where families don’t have to fight alone, and where research is directly shaped by the needs and experiences of those living with rare conditions.
My story is one of perseverance, love, and teamwork. Through every challenge, I’ve discovered that the most powerful tool we have is each other. Together, we can build a brighter, healthier future, where no one is left behind in the fight for better care, better treatment, and better understanding. This is just the beginning, and the journey ahead is one I am committed to walking alongside others who share the same passion and vision for a better tomorrow.
When I look at my children, I am reminded of why we fight. Their laughter, their dreams, and their unwavering spirit are what keep me going, even on the hardest days. Every step forward is not just for us—it’s for every family walking this path, for every child who deserves a brighter future, and for every parent who has given everything to see their child thrive. We are in this together, and together, we will create a world where hope shines brighter than ever before.
