How Black Feather Big Chief Corey Rayford is leading keratoconus patients toward sight-saving procedures at University Medical Center New Orleans

When Black Feather’s Big Chief Corey Rayford dons his Black Masking Indian Tribe suit during Mardi Gras each year, it’s impossible not to see him coming your way. 

On the other hand, thanks to an early childhood diagnosis of keratoconus, a condition that leads to severe vision distortion, Rayford likely won’t be able to see you until you are close enough to touch his suit made of thousands of tiny crystals.  

On Rayford’s elaborate costumes, each and every bead is sewn, one by one, by his own two hands. It’s the way he has done it for decades. 

How does he continue to sew tiny beads as his vision worsens due to degenerative keratoconus?  

“With patience and grace from God,” said Rayford, 53, adding that next to his wife Candy, and the eight children they share, Rayford’s Black Feather membership is the pride of his life. 

A culture bearer under strain 

Black Feather was founded in 1992. Like other Black Masking Indian tribes that take to the streets of New Orleans during Mardi Gras, the beading, sewing, and crafting of the costumes is a family tradition rooted in art, ritual, memory, and survival. Tribes walk through neighborhoods with music to show their suits, honor one another and claim the informal right to having made the prettiest work that year. 

Every year requires a new suit. Every suit honors a family member. (This year, Rayford is honoring his late mother-in-law Yolanda.)  

Rayford has served as Big Chief of Black Feather for 14 years and before that was Second Chief under his cousin, who has since passed away. When leadership passed to him, he did not hesitate. 

“But it has never been easy for me,” Rayford said. “I need help from family and friends to make my suit each year. I couldn’t have done it without help from my parents, Gwendolyn and James Sr. Rayford, and my siblings, James Jr. and Tiffany Rayford, who have always walked beside me and have always had my back.”  

A duty owed to family and ancestors 

Black Feather has 22 members ranging in age and is supported by a wider circle that helps with community service, including feeding the homeless and, more recently, talking openly about access to healthcare in the community.  

Candy, Black Feather’s Big Queen, has been by his side throughout their 11-year marriage as they raise their children who range in age from 15 to 35. Rayford recently learned that two of their daughters have keratoconus like he does. That knowledge flipped a switch in his head.  

Now, he wants to do everything he can to spread the word about Corneal Cross-Linking (CXL), a vision-saving program now offered at University Medical Center New Orleans. CXL, he said, may change the game for himself, his daughters, and others with the degenerative eye condition. 

New technology now available at University Medical Center  

Rayford learned about advances in corneal collagen cross-linking, the machine and medication at University Medical Center since the hospital acquired the technology and equipment in early 2025, thanks to grant funding. For the first time, it represents a chance to preserve his vision that did not exist when he was younger.  

Over his lifetime, Rayford has undergone more than a dozen eye procedures, including corneal transplants in both eyes. None restored meaningful vision. There were moments when he nearly gave up hope entirely. Some days, he said, he is closer to being fully blind than others. More often than not, he can barely make out the big “E” on an eye chart. 

“The machines are better now. The procedures are improved,” he said. “They tell me I’m going to get this procedure for sure.” 

Until then, Rayford talks. Constantly. To anyone who will listen. 

He talks to people who stop him because they saw him on television discussing the cross-linking program at University Medical Center. He talks to people who recognize him from Super Sundays. He talks to residents in apartment complexes where he has worked, people who quietly admit they are losing their sight too. 

“Many of them have keratoconus,” Rayford said. “Many of them are scared. Many of them are embarrassed.” 

Keratoconus is a progressive eye disease that causes the cornea—the clear front surface of the eye—to thin and bulge outward into a cone shape. As the cornea weakens, light no longer focuses evenly on the retina, leading to blurred or distorted vision, glare, halos around lights, poor night vision and frequent prescription changes. In advanced stages, glasses can no longer correct vision at all. 

The condition often begins in the early teen years or early adulthood and worsens over time. Rayford has long lived with the expectation that one day, he might simply stop being able to see. 

Until now. 

As he makes his way around talking about the importance of eye screenings and availability of vision-saving care at University Medical Center, the irony of Rayford’s situation doesn’t escape him. His passion to make his Black Feather costumes is the very thing that is hardest to do because of his keratoconus. Beading, by all accounts, is difficult on even the healthiest eyes.  

Still, he keeps sewing. And, he keeps talking. And by doing so, Big Chief Corey Rayford has become a guide for people who once believed they were being left behind in the dark. 

How corneal cross-linking (CXL) can help 

Rayford’s renewed hope is grounded in advances in corneal collagen cross-linking (CXL), an FDA-approved, sight-saving procedure used to treat progressive keratoconus. At University Medical Center, ophthalmologist Rebecca Metzinger, MD is offering the procedure using newly acquired technology made possible when the hospital obtained the equipment in March 2025. 

Dr. Metzinger explained that corneal collagen cross-linking is a minimally invasive, one-time procedure that strengthens the cornea to slow—and in many cases stop—the progression of keratoconus. The procedure takes about an hour and is painless, offering patients the possibility of preserving remaining vision and, for some, restoring visual function they feared was lost forever. 

So what’s the issue? Why don’t people with keratoconus know about CXL?  

You might think it’s an issue of science catching up with patients’ needs. Not really. The FDA approved the CXL procedure in 2016. 

Yes, at least in New Orleans, the issue had been access until University Medical Center obtained the equipment in March 2025. 

But the truth is, this is a question of numbers, namely the price tag of care. 

Medicaid does not cover cross-linking, and the medication alone can cost up to $3,000 per treatment. In high-need communities like New Orleans, many patients never even learn the procedure exists. 

“We were finally able to acquire the cross-linking machine in March 2025 thanks to grant funding from the Southern Eye Bank Foundation,” Dr. Metzinger said. “Our program is focused on treating uninsured patients, Medicaid recipients and incarcerated individuals who would otherwise have no access to this care.” 

There are roughly 450 patients on University Medical Center’s CXL waiting list, many of them young and still at a stage where vision can be preserved. Grant funding also covers specialized contact lenses, which can exceed $1,200 per pair before fitting fees. 

Dr. Metzinger said, “Each CXL case represents a life changed forever. A young adult who could barely read the largest letter on the eye chart can now see well enough to drive, work, and stay in school.” 

Big Chief Rayford sharing University Medical Center’s message of hope 

As a Mardi Gras Indian Big Chief who has lived 53 years with the consequences of inadequate eyecare, he is helping University Medical Center, Dr. Metzinger, and her team reach out into neighborhoods where keratoconus is common and untreated. He speaks openly about the disease. He explains that cross-linking is straightforward and painless. He urges families to get their children screened early. 

“The sooner a child is diagnosed, the better the chance they won’t lose their vision,” Rayford is always repeating. 

Dr. Metzinger agreed. Screenings often uncover other eye and health conditions as well, prompting pediatricians, primary care doctors, teachers and community leaders to refer patients sooner. 

Whatever comes next, Rayford still hopes to see. 

Vision often deteriorates with age. “But when you’re born with a condition like keratoconus, you live knowing there may be a day when sight is gone,” he said. “For me, thank God, that day hasn’t come yet. Doctors have kept me from completely losing my sight and I pray cross-linking may give me some of my sight back.” 

Rayford has lived with embarrassment about his waning eyesight his whole life. He remembers the teasing about his thick glasses and the cruelty that followed him from childhood into adulthood.  

Now, he is done hiding. Rayford is dedicating himself to making sure that anyone within earshot who is experiencing deteriorating vision knows where to go for help.  

“Get yourself and your children to University Medical Center to be screened,” he said with the command of a real tribal chief. “You don’t have to be afraid of losing your vision anymore. The doctors at University Medical Center can help you.”