Sickle cell disease is an illness that heavily impacts the Black community. Data shows that 1 in every 365 Black Americans is born with sickle cell, which affects approximately 100,000 Americans (over 90 percent being non-Hispanic Black or African American), according to the Centers for Disease Control (CDC).
From July 22 to July 26, the Sickle Cell Community Consortium will be holding its 13th annual Warriors Convention (Warrior Con ‘26) taking place at the Sheraton Gateway Los Angeles Hotel located at 6101 West Century Blvd, Los Angeles, Calif. 90045
It will be a space where patients, researchers, healthcare providers, doctors, and all can come together to really understand how to continue to live life, obtain resources, share education, and more. The founder and executive of Warrior Con ‘26 spoke about her hopes and the impact of the convention so far.
“In sickle cell disease, it’s been around for over 100 years — it was the very first disease to have its molecular basis described and understood, and yet no help has come. No one has come to this burning building to rescue those of us within it, so if no one is coming, then we have to rescue ourselves. We needed a space where patients, caregivers, and community organizations could [meet] so we can identify problems, needs, gaps, and then address them,” said founder and executive Dr. Lakiea Bailey.
The theme of this year’s event is “Legacy in Action: The Next Move,” which emphasizes the power of community building, advocacy, perseverance, and progress amongst the sickle cell community.
She continued, “A lot of people are aware of the various treatment options that have come around, and as excited as we are about that — and we are. We are incredibly delighted to see these options — right now they are not accessible to the majority of us.”
She further added, The price tag and what it takes to access them is out of range for most of us, and it’s not the first time: sickle cell has been the backbone of two separate Nobel Prizes with lots of research, but it doesn’t often wrap back around and benefit us. The next step is to ensure that does not happen — that treatments and cures designed by us, with us, are here for us, and that we benefit from them when it is all said and done.”
Dr. Bailey has been leading the conference for the past 13 years. Her caregiver is her nephew, eight-year-old David Walker.
“I hope there’s a breakthrough where everyone can start living longer, because I want to have my auntie, I want to have my whole family around longer with me. And I hope that people with sickle cell, or people who even support it, find that breakthrough, and I hope here we inspire someone to make that breakthrough and find a way,” said Walker.
Bailey added, “I hope the greatest impact has been community — finding your tribe, finding a group where you belong, where there are others that understand exactly what you’re going through.”
As one of the largest patient-led sickle cell convenings in the country, Warrior Con 26 will also highlight treatments, technology, therapies, caregiver support, leadership, mental health, family-focused programming and more. They will also have a Black Tire Gala (Kings, Queens & Warriors Royal Ball).
Tahira Muhammad Austin is also a person living with sickle cell disease, and she is also currently in search of a kidney donor. She is the chief program officer and a co-founder of Crescent Foundation in Philadelphia, Penn.
“I think conferences that are led by people who live with sickle cell disease like Warrior Con tend to be more engaging and impactful because those who attend get to see themselves through the leadership.”
She continued. “I was born with it, but I wasn’t diagnosed with it [sickle cell] until I was six years old… I kept getting frequently sick… my parents told me that every time I would get the smallest cold, it would last.” After falling ill and passing out in Kindergarten, her father rushed her to a local hospital in Philadelphia. Dr Kim Smith Whitley, a fellow at the time, helped Austin and diagnosed her, while also helping her family find the appropriate treatment.
“I hope the lesson [when people come to Warrior Con] is ‘I found my people.’ Oftentimes, warriors mention the loneliness of having sickle cell disease, even being amongst family or not having many friends because people think that [we’re] flaky or can’t keep good friends [due to the illness].”
To register for the event, please visit www.sicklecellconvention.org.
