Dr. Lakiea Bailey has spent over a decade bringing attention and resources to those living with rare diseases. A prominent advocate and research scientist with a Ph.D. in Molecular Hematology and Regenerative Medicine, Dr. Bailey was diagnosed with sickle cell disease at age three and has dedicated her life to supporting and empowering the sickle cell community.
Despite the devastating symptoms of sickle cell, Dr. Bailey was determined to complete her educational goals. At the completion of her doctorate training, she founded and began working as the Executive Director of the Sickle Cell Community Consortium, a coordinated network of sickle cell community-based organizations (CBOs), patient and caregiver advocates, community partners, and healthcare/research advisors.
The Consortium functions as an organizing entity allowing this diverse group of stakeholders to identify, prioritize, develop, and execute solutions for patient-identified needs and gaps within the sickle cell community.
Bayou Beat News spoke with Dr. Bailey during a recent interview where she discussed the Sickle Cell Consortium’s 11th Annual Warriors Convention, the importance of returning the conference to Atlanta, Georgia and the recent surge of sickle cell awareness in television and mainstream media.
When asked about her excitement for this year’s convention, Dr. Bailey said, “I am most excited about the children. We have tracks for all age groups and a free nursery for babies between 18 months and four years. We partner with an organization licensed to take care of the young ones, and we have activities, education, and a STEM room available for the children.”
This year’s highly anticipated Sickle Cell Warriors Convention will be hosted at the Atlanta Westin Perimeter North Hotel from July 17 to July 21, after last year’s success in Houston, Texas.
Excitement surrounds the convention, partly due to Atlanta’s recent establishment of a first-of-its-kind sickle cell sanctuary, thanks to the Sickle Cell Foundation of Georgia.
“They are one of our partners that has opened that up locally. They have so much that they’re planning to do and there are so many services that can be accessed free of charge. It really does provide a place for warriors to go to seek alternative treatment in care. There’s the hospital of course, but we all hate to go, the sanctuary is someplace you can look forward to going to also get different types of treatments and care,” Dr. Bailey noted.
But deciding to bring the convention to Atlanta wasn’t an overnight decision.
“It’s a vote. The sickle cell community votes two years out where we’re going to go, and it moves around based on where that vote lands,” she explained. “We are excited to return to our home city of Atlanta. This year’s theme, ‘Lead the Way: From Patient to Powerhouse,’ embodies the journey and transformation of those affected by sickle cell disease.”
The convention promises to be a unique and comprehensive event designed entirely by and for the sickle cell patient and family community. It will feature the reintroduction of the Sickle Cell Consortium’s Warrior University classes, a faith-based brunch, a family game night, a campus carnival, and dedicated sessions for various groups including men, young adults, caregivers, and newly diagnosed families. The Expo, scheduled for Saturday from 12 to 4 p.m., offers free booths for those working on sickle cell treatments, therapies, and technologies.
“If they have an app or a food plan or dietary options, whatever it is they’re doing in the sickle cell health space, they can have a free booth at the expo. We want to ensure that everyone, not just those with sickle cell disease, can attend and learn. The more people we can educate, the more awareness we can bring to our Sickle Cell community,” Dr. Bailey emphasized.
To ensure accessibility, all sickle cell patients, warriors, and caregivers will benefit from a scholarship registration rate of $25 for both in-person and virtual attendance, compared to the standard registration fee of $180.
“The $25 scholarship rate covers everything, including all meals, special activities, and tickets to various events,” she emphasized. “There’s plenty of scholarships, that we work very hard to make sure this is as affordable as possible for this community.”
Additionally, there is a Family Max-Out rate of $100 for large families. Scholarship assistance for hotel and lodging costs is also available.
The Consortium is expecting record numbers this year thanks to the new Netflix series Supacell, whose premise is based on the discovery that having sickle cell gives you superpowers. Dr. Bailey also cites the younger generation being more vocal about sickle cell through social media.
“I think it’s fantastic to see us being discussed,” she said. “Although, it’s unfortunate, for example, with the Saturday Night Live that happened a few months ago when misinformation is pushed out on a big network in a big way. That episode had a lot of bad information about curative therapies and gene therapy. When that happens, it’s unfortunate, but it gets people talking. For a long time, people thought sickle cell wasn’t a thing anymore because no one was talking about it. So I’m of the opinion that anything that gets people talking is a good thing, even if we have to then go back and correct misinformation.”
Continuing the effort to correct misinformation, Dr. Bailey emphasizes that you do not need to be a sickle cell warrior, patient, or caregiver to attend the convention, and she stresses that you won’t want to miss this year’s spectacular workshops and events.
“We do have a few surprises planned, but that’s why they are surprises,” she says. “I can’t reveal too much about what we’re working on, but various people are working diligently to make this convention the best one yet.”
For more information and to register for the convention, visit sicklecellconvention.org If you are seeking a free vendor booth at the expo, please visit sicklecellconvention.org/expo.
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Stacy M. Brown is an NNPA Newswire Correspondent