Hi, I’m Jireh! After surviving two strokes and receiving a Fabry Disease diagnosis at 30, I’ve learned that my story is defined by grace, not my condition. I’m leaning into the promise that there is always a reason to hope and a purposeful future ahead. As Romans 12:12 says, I am “joyful in hope, patient in affliction, and faithful in prayer.” Every day is a gift, and I’m walking into my tomorrow with strength and faith.

My unique strength is my faith!

Instagram: @jireh.recaps

Hi, I’m Munique Slongo, a public speaker, writer, and advocate living with Fabry disease. I care deeply about honest conversations, meaningful human connection, and bringing visibility to experiences that too often remain unseen. Fabry is a rare genetic condition that affects every part of my body, bringing constant pain, fatigue, and challenges that are often invisible to the world around me. Living with it has shaped the way I observe life, people, and the quiet strength required to keep moving forward. I am the creator of Lady Fabry, an advocacy project dedicated to giving voice to the lived reality of rare disease. Through writing, public speaking, and storytelling, I work to translate these experiences beyond clinical language and into something human, understandable, and real. My hope is simple: that by speaking openly about these realities, we help build a world where rare disease patients are no longer invisible, and where their lives are met with understanding, dignity, and respect.

”Fabry disease lives in my genes. But it does not get to write my story. My voice does.” – Lady Fabry (Munique Slongo)

Instagram: @ladyfabryinternational & @ladyfabryedoencasraras

Hi, I am Taylor, Fabry is not only a part of my life, but one of my biggest passions. I am always ready to speak out for myself and others if needed. Because even if our voices shake, it matters more than we may realize.

Instagram: @friendswithfabry

Hi, I am Olivia ! I was officially diagnosed with Fabry disease in 2023, but experienced symptoms for several years prior. Before my diagnosis I served in the army and had a career in finance. I’ve been on enzyme replacement therapy for almost a year. I am currently living in Michigan with my husband, son and dog. I spend spends most of my time focusing on my health and taking care of my one-year-old son. I am hoping to use my experience to spread awareness and advocate for females and veterans with Fabry.

Instagram: @myfabrylife