Irie Long: Rare Partner & Advocate

April 24, 2022

Irie was introduced to the rare world when she met her husband, Rob. Like Irie, Rob was a student-athlete in college. Irie played soccer at Grand Valley State University, and Robert was a punter for the Syracuse football team, but they didn’t meet until after they finished their stints as student-athletes. 

Robert was diagnosed in 2010 with a grade III anaplastic astrocytoma after his last regular season college football game during his senior year at Syracuse University. A brain tumor was the last thing a college football player being scouted by NFL teams would be thinking about, but there it was. The tumor was the size of a tennis ball, and he was told he would have 36 months to live, and that the survival rate was 12% for 10 years after diagnosis. He is now in year 11 after treatment. Rob also had a family history of cancer, including his grandfather who had brain cancer and died at just 36. 

Irie did not know Robert during his diagnosis and initial treatment journey. She does see how his mental health is affected when it is time for his scans every four months, or when it comes to making long-term plans. Robert works in the rare disease space as well, so telling his story and his diagnosis and treatment journey through his work, can be triggering. 

“I’m definitely surprised to learn how many different rare diseases there are, and how many people live with a rare disease, or are impacted in some way by a rare disease,” shared Irie. “It’s surprising how long it can take to get a diagnosis, and how many people are left with little to no information or treatment options.”

Irie and Robert met through mutual friends while Irie was working at Temple University as an Academic Advisor for student-athletes. Robert has worked for Uplifting Athletes in various roles, and recently became CEO and Executive Director. Uplifting Athletes is a non-profit organization that harnesses the power of sport to build a community that invests in the lives of people impacted by rare diseases. The non-profit was started after Penn State football player Scott Shirley’s father was diagnosed with a rare disease in 2002, and his teammate, Damon Jones, felt that they could use the spotlight of college football to shine the light on rare disease. Today, there are more than two dozen chapters at colleges around the United States, and Uplifting Athletes has raised more than $7 million to support its mission since its inception.

“Through volunteering with Uplifting Athletes, I knew I was meant to transition my talents of helping others into the rare disease space. I wasn’t going to be a scientist or a healthcare professional, but having the diversity of skillsets and cognitive thinking and a wealth of experience in working collaboratively, you can still have a great, positive impact. The role I felt I could be most impactful for patients and their loved ones was in advocacy.”

Irie and Rob’s experiences with his rare disease drew them to work in the rare world. They were inspired by connecting and helping others, and driving meaningful advances. They understand that it can be hard, especially for Rob’s mental health, to be surrounded by stories that can be triggering. He sees a mental health professional who diagnosed PTSD and other mental health issues stemming from his diagnosis. Irie shared that he even feels survivor’s guilt sometimes. Overall, working as advocates in the rare disease community is very rewarding and meaningful for both Irie and Rob. 

Irie joined Global Genes in March as a Senior Project Coordinator, and works specifically with the Global Advocacy Alliance team. She has transferred her experiences as a caregiver to someone with a rare disease into being an advocate.

“It’s [The Global Advocacy Alliance] a great place for everyone to come together, engage, learn, build, and grow off each other. The connections and free-flow of information are really important to push and pull others up. Although many organizations may be focused in their own specific disease space, they can still learn from one another, contribute to one another’s efforts, and it’s all towards the same common goal.” 

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