Ariam Alula
A public school kid from the Bronx and Manhattan who has traveled to 25+ cities around the world, Ariam brings journalism skills, a history of advocating for her sibling, and a deep understanding of why language is important, especially when navigating healthcare. Learn what she brings to We CU, what one moment in a physician’s office taught her about advocacy, and what nonprofit work gets right.
Tell us about yourself and what brought you to We CU.
I’m a kid from the Bronx and Manhattan, and by my 20s, I’d traveled, visited, or lived in more than 25 cities around the world. Despite everything I’d seen and experienced, I hadn’t heard of urticaria before joining We CU. But in some ways, this work isn’t new for me. I come from a family of caregivers. My parents are immigrants who had to navigate a complex and sometimes unfair healthcare system across language, cultural, and informational barriers. And I’ve spent years advocating for my sibling on the autism spectrum.
What I learned early from my own family and personal advocacy is that caring for someone with any disability, condition, or illness takes courage, patience, and hope. While this may be my first role at a patient advocacy organization, I arrived already understanding what it means to fight for people who deserve better resources and quality of life.
Why does nonprofit and advocacy work interest you?
I studied engagement journalism at the Newmark J-School at the City University of New York, and from the beginning, my focus was on communities whose stories often go untold. I spent more than a year working with caregivers of people with autism and other disabilities and produced community events, immersive storytelling content, and a facilitated podcast roundtable designed to meet people where they were and give them tools to care for themselves (and not just the people they loved).
What I kept coming back to was that caregivers are some of the most resilient, compassionate people I’ve ever met. They are also some of the most overlooked. Nonprofit work aims to correct that lens by centering the people the system too often sidelines. That’s the work I want to be part of.
How do you relate to people in the urticaria community?
I won’t pretend I’ve lived with hives or know firsthand what a flare feels like. But I do know what it’s like to sit in a physician’s room hoping someone will take you seriously. In my early 20s, I was being tested for PCOS. The specialist my PCP referred me to wasn’t listening to my concerns until I finally blurted out, “I am not having a good experience!” That quickly got her attention. Sometimes (read: most of the time) it takes being vigilant and firm to be heard and treated properly.
And that’s exactly what I hope We CU’s platform can help change. Too often, Black and Brown patients have to “prove” their pain. I recently heard a young Canadian dietitian echo something I’ve always known but could never quite articulate: having the right language matters. Describing a symptom as throbbing, burning, or achy instead of “it comes and goes” can be the difference between being dismissed and being taken seriously. That’s also partly why I’ve developed a language and style guide for We CU’s communications, and why I’m so excited about resources like Scratch, which is designed to arm people with chronic hives with the kind of knowledge and readiness patients often need before they ever walk into an appointment.
What do you enjoy outside of work?
I’m a naturally curious person, which probably explains both my journalism background and my love for travel. In my 20s, I made it a point to experience as much of the world as I could and either visited or lived in more than 25 cities, internationally and domestically. Every place taught me something about myself and humanity.
These days, I’m closer to home, which is the Washington D.C. Area. I spend my time in church and volunteering for a local youth nonprofit.