BlackPressUSA
Beyond Breakthroughs: Sickle Cell Advocates Say the Fight for Better Care Is Far From Over
BLACKPRESSUSA – Gene therapies have brought new hope to the sickle cell community, but patients and advocates at Warrior Con 2026 say medical breakthroughs have not ended the fight for respectful care, stronger support systems and greater public awareness.
By Stephen Oduntan
To most people, Scott Soliz looks healthy.
But appearances, he says, can be deceiving.
“It’s an invisible disease,” said Soliz, 35, who has lived with sickle cell disease since birth. “People think we’re okay because we look okay, but inside we’re not.”
That invisible struggle became one of the defining themes at Warrior Con 2026, where patients, caregivers, physicians, researchers and advocates from across the United States—and as far away as the United Kingdom—gathered in Los Angeles to celebrate scientific progress while confronting the barriers that continue to shape life with sickle cell disease.
The conference came at a pivotal moment for the sickle cell community. Gene-editing therapies have ushered in a new era of treatment, offering hope that was unimaginable just a decade ago. People with sickle cell disease are living longer than previous generations, and researchers say advances in molecular medicine are transforming what may be possible for future patients.
Yet for many attendees, the greatest obstacles are no longer found in the laboratory.
They are found in emergency rooms, where patients say they are too often viewed with suspicion when seeking treatment for excruciating pain. They are found in persistent misconceptions that sickle cell disease affects only Black people or that those living with the condition “look fine” and therefore cannot be seriously ill. And they are found in longstanding disparities in funding, access to specialized care and public awareness.
“Many people would say the biggest advancement is gene therapies and the ability to alter the DNA to correct the sickle cell mutation,” said Dr. Lakiea Bailey, founder and executive director of the Sickle Cell Community Consortium, who has lived with the disease since childhood. “It is a great advancement.”
But, she cautioned, scientific breakthroughs alone are not enough.
“I think we also need advancements in just basic standards of care, which is still greatly lacking,” Bailey said. “We are definitely living much longer than we used to. However, we are still not the recipients of support the way many other diseases are.”
Bailey, who was diagnosed with sickle cell disease at age 3 and earned a doctorate in molecular hematology and regenerative medicine, said one of the greatest barriers patients continue to face is how their pain is perceived.
“Once we go in for treatment, we’re often accused of drug seeking instead of offered the help that we need,” she said. “People are sent away while still quite ill. After a while, it gets difficult, and when you find yourself having to choose between death and dignity, after a while dignity starts to win out.”
Her comments echoed those of attendees throughout the convention, many of whom described living with an illness that remains largely misunderstood despite decades of medical progress.
While researchers continue pushing the boundaries of treatment, longtime advocate Dr. Joyce El, founder and CEO of the nonprofit Journey By Grace, said the promise of new treatments must be matched by greater support for the everyday realities of living with sickle cell disease.
El praised advances in gene therapy and research but said patients continue to face challenges that cannot be solved in a laboratory.
“People still have to live,” she said. “They still need services such as transportation, housing and food. We can’t get so caught up in spending money on conventions and research that we forget people still have to live.”
She also said families need better support as young people transition from pediatric to adult care, a period she described as one of the most overlooked stages of living with sickle cell disease.
“When they turn 18, everything changes,” El said. “Their doctors change. Their benefits change. If families aren’t preparing them, they’re not ready.”
For El, improving public understanding remains just as important as advancing medical treatment.
“Sickle cell is a real disease,” she said. “Warriors are not drug-seeking individuals. They experience real pain.”
“It’s a hidden disease,” said Vashti-Iona Beckford, a sickle cell trait carrier and advocate from London. “A lot of people don’t understand how someone could be in pain if they don’t look like they’re in pain.”
For Beckford, Warrior Con offers something that medicine alone cannot provide: community.
It helps to be around people that know it’s a hidden disease. You’re not isolated in your feelings.”
That sense of belonging is what continues to draw hundreds of families, patients and advocates together each year—not only to learn about the latest treatments, but to remind one another that no one should face the disease alone.
For former NFL wide receiver Devard Darling, the consequences of misunderstanding sickle cell trait are deeply personal.
In 2001, Darling’s identical twin brother, Devaughn, collapsed and died during an offseason football conditioning workout at Florida State University after complications related to sickle cell trait. The tragedy, which drew national attention to the condition, transformed Darling into an advocate for greater awareness among athletes, coaches and medical professionals.
“Back then, we had no idea,” Darling said. “We didn’t know the complications of having the trait or how deadly it could be in certain situations.”
The brothers had dreamed of playing football together at Florida State. Instead, Devaughn’s death became the catalyst for a lifelong mission to educate others through the As One Foundation, which promotes awareness of both sickle cell disease and sickle cell trait.
“If we knew how to prepare our athletes, our coaches and our trainers, things might have been different,” Darling said.
He points to one of the major changes that followed his brother’s death: in 2010, the NCAA began requiring Division I athletes to be tested for sickle cell trait or sign a waiver acknowledging the risks before participation.
Still, Darling believes significant misconceptions remain.
“People think sickle cell trait doesn’t matter because many carriers never experience symptoms,” he said. “But that’s where it begins.”
One misconception he is determined to challenge is the belief that sickle cell affects only Black people.
“It’s not a skin disease,” Darling said. “It’s a blood disease.”
While sickle cell disease is most common among people whose ancestry traces to regions where malaria has been prevalent—including parts of Africa, the Mediterranean, the Middle East and India—it can affect people of many racial and ethnic backgrounds.
“The medical field has to change,” Darling said. “That’s what we need the funding for—research. Knowledge is power.”
His message echoed throughout Warrior Con, where education was viewed not simply as awareness, but as a way to save lives.
For many attendees, however, Warrior Con is about more than the latest research or policy discussions. It is about finding a community that understands what life with sickle cell disease actually feels like.
Scott Soliz said Warrior Con gives people living with the condition something many struggle to find elsewhere: a community that understands their experiences.
“When you come to an event like this, you’re talking to different warriors about similar experiences,” Scott said. “It’s a breath of fresh air to know that you’re not alone.”
His twin brother, Steve Soliz, said one of the biggest challenges is combating misconceptions about people living with the disease.
“People mistake lazy with being tired or fatigued,” Steve said. “We’re not lazy at all. We’re very talented people. We just have to take time to heal and focus on our health.”
Bailey said that sense of community is exactly what Warrior Con was created to foster.
“I want everyone living with sickle cell and caregivers to leave here feeling seen and empowered,” she said. “I want others who don’t know much about sickle cell to leave here knowing a lot more and how to support the people in their lives.”
Looking to the future, Bailey said she is encouraged by the next generation of patients and advocates.
“They have more access to treatments than we ever have. They’re more knowledgeable than previous generations, and they’re more willing to fight for what is right,” she said. “I’m very excited about these kids.”
Black Press
Event Preview: ‘Fashion v. Fascism’ – A Runway Revolution Is Coming to the Bay Area
“Fashion v. Fascism” (FVF) is an upcoming visually immersive event combining fashion, music, and political theater to expose the rise of fascism in the U.S. and advocate for resistance. Described as a live “runway revolution,” FVF premieres October 3 at The Rotunda in downtown Oakland. The event will feature five runway collections spotlighting elements of contemporary fascist politics, accompanied by political theater and live music, culminating in a call to action. Organizers state that culture is a potent defense when democracy is under siege. Read more to learn about this unique event.
“Fashion vs. Fascism” (FVF) is a visually immersive evening of fashion, music and political theater exposing the rise of fascism in the U.S. and the need to resist. Democracy is under siege, and culture is one of our most potent defenses, organizers say.
Called a live “runway revolution,” FvF premieres Oct. 3 at The Rotunda, 300 Frank Ogawa Plaza in downtown Oakland.
A play that is part fashion show, part protest, part performance art, FvF stages five runway collections spotlighting the pillars of contemporary fascist politics and the urgent need to resist: the myth of a “glorious past,” the manufactured emergencies used to justify surveillance and crackdowns, and the oligarchs and grifters profiting from it all. Runway fashion shares the stage with political theater and live music, with a closing call to action.
“We need lawsuits, ballots and mass protests, but none of it lands if we’re not also fighting for people’s imagination,” says Linda Burnham, co-producer of the show. “People are exhausted and scared. FvF will expose the absurdities of fascist mythology and ideology in ways a news headline cannot and spark new ideas about how to resist.”
“Fascism doesn’t win by policy alone. It wins by telling a story. A myth about a ‘Golden Age.’ A permanent emergency that makes cruelty seem necessary. That’s not an accident, it’s a strategy, and it works on the same terrain as culture: image, spectacle, emotion,” says Aya De León, the show’s playwright.
“Every piece on this runway translates what is happening under fascism into a feeling,” explains Erica Furlong, the FVF creative director. “One designer’s trench coat is covered in pockets stamped ‘TRUTH,’ ‘MEMORY,’ ‘HOPE,’ ‘VOTE,’ ‘FUTURE,’ because that’s literally what gets seized first, pocket by pocket, under fascist decline. Fashion can hold grief and hope in the same silhouette, and that tension is exactly what this moment needs.”
At its best, fashion is about creativity, diversity, innovation, experimentation and the free exchange of ideas. Fascism, by contrast, demands conformity and control, while suppressing dissent.
FVF was created, organizers say, because democracy should always be in style.
Featured designers include Erica Varize, Rickie Lee, Tianna Charity, Julie Wong, and Maria Flores. The evening features a script by lead playwright Aya De León, musical performances by Mindeullae Project and DJ Emancipation, and other special guests.
FvF is designed to travel. Following the Oakland premiere, FvF will extend its reach through a documentary short, a curriculum on contemporary fascism in the U.S., and a full replication playbook — design templates, script, and curriculum — so organizers in other cities can stage their own version of the show.
Get more details at www.fashionvfascism.org.
Black Press
OP-ED: How Does Your State Rank for Pre-K?
BLACKPRESSUSA NEWSWIRE — “Other states should take note: Georgia proves that state-funded preschool with well-qualified teachers, pay parity with K-12, small classes, and strong continuous improvement systems can be scaled as a universal program,” said NIEER director Steve Barnett. “With new initiatives to support quality, Georgia can expect increased enrollment, but leaders should also actively promote increased enrollment.”
Georgia’s state-funded pre-k program for 4-year-olds was recently recognized as the largest state-funded preschool program in the nation to meet all 10 quality benchmarks, and the first universal program to do so. Georgia’s recognition is the top finding in the National Institute for Early Education Research’s new 2025 State of Preschool Yearbook. The yearbook provides an annual snapshot of state-funded preschool across the country. Forty-four states and the District of Columbia fund preschool programs.
Only five additional states meet all 10 of NIEER’s research-based benchmarks for quality —Alabama, Hawaii, Michigan, Mississippi, and Rhode Island—in this year’s report. None of those programs have the reach of Georgia Pre-K. NIEER’s benchmarks measure essential preschool quality indicators, including teacher qualifications, class sizes, early learning standards, and program assessments.
“Other states should take note: Georgia proves that state-funded preschool with well-qualified teachers, pay parity with K-12, small classes, and strong continuous improvement systems can be scaled as a universal program,” said NIEER director Steve Barnett. “With new initiatives to support quality, Georgia can expect increased enrollment, but leaders should also actively promote increased enrollment.”
Nationally, state support for preschool education hit record highs in enrollment and funding in 2024-2025. The pace of growth slowed, however, compared to the prior year, and many states continue to lag behind pre-pandemic enrollment levels. Preschool enrollment increased by 44,000 children nationally, reaching almost 1.8 million, including 37% of U.S. four-year-olds and 9% of three-year-olds. California, Colorado, Michigan, Minnesota, and Missouri contributed the most to increased enrollment, adding more than 52,000 new seats.
States spent nearly $14.4 billion on preschool in 2024-2025. Including federal and local dollars, total spending was almost $17.7 billion. Three states each spent more than $1 billion last year: California ($4.1 billion), New Jersey ($1.2 billion), and New York ($1 billion). Together, these three states account for 45% of all state preschool spending. Texas adds almost another $1 billion.
Spending increased by $434 million, or 3%, adjusted for inflation. Twenty-eight states increased preschool funding, including Michigan and New Jersey, which each added more than $100 million. “Not only does preschool access vary by which state a child happens to live in, but so does the quality of that preschool experience,” said Allison Friedman-Krauss, lead author of the report. “Only high-quality early care and education programs support children’s development enough to result in lasting academic and other gains that ultimately deliver savings for taxpayers.”
A record six states met all 10 of NIEER’s recommended quality standards, with Alabama doing so for the 20th consecutive year. Georgia joined this list this year after improving its teacher-to-child ratio from 1:11 to 1:10 and lowering maximum class sizes to 20. Several states met 9 of 10 benchmarks, including New Mexico, which is working toward universal access for both three- and four-year-olds. Once New Mexico requires all lead teachers to have a bachelor’s degree in early childhood education, it will be on par with Georgia in terms of both quality and quantity.
Not all states moved forward. Twenty states enrolled fewer preschoolers in 2024-2025 than the prior year, with enrollment dropping by more than 1,000 children in Arizona, Florida, New York, Ohio, Oklahoma, and Wisconsin. Seventeen states spent less on preschool than the prior year, adjusted for inflation, with Arizona, North Carolina, Oregon, and Texas seeing the largest percentage declines. Additional information about the State of Preschool Yearbook, including individual state profiles and maps, graphs, and state rankings, can be found at www.nieer.org.
Black Press
Leaders to Gather at African American History Museum for Voting Rights Call to Action
BLACKPRESSUSA—Rep. Jonathan L. Jackson, Bishop William J. Barber II, and a coalition of congressional, faith, and civil rights leaders gather Tuesday outside the National Museum of African American History and Culture, days after founding director Lonnie G. Bunch III announced his retirement. March On for Freedom 2026 National GOTV Bus Tour launches ahead of the 2026 midterms.
Black Press
Port of Oakland, Army Corps Sign Historic Harbor Design Agreement
OAKLAND POST — Oakland Port Commission President Stephanie Dominguez Walton called the agreement a historic milestone that will support thousands of jobs. “Today marks a historic occasion for the Port as we sign the inaugural Design Agreement for the Turning Basin Widening Project, which will keep Oakland competitive,” said Walton.
A $642 million project designed to accommodate larger cargo ships and strengthen the Port of Oakland’s position as a major Pacific trade gateway moved a significant step closer to construction on Aug. 27.
The U.S. Army Corps of Engineers (USACE) San Francisco District and the Port of Oakland commemorated the signing of the inaugural Design Agreement for the Oakland Harbor Turning Basins Widening Projectduring a ceremony aboard the USS Potomac, the presidential yacht once used by President Franklin D. Roosevelt.
The project will widen the Port’s Inner and Outer Harbor turning basins, allowing today’s increasingly larger and longer vessels more space to safely maneuver and turn around. The current basins are narrow, creating delays and operational inefficiencies.
Oakland Port Commission President Stephanie Dominguez Walton called the agreement a historic milestone that will support thousands of jobs.
“Today marks a historic occasion for the Port as we sign the inaugural Design Agreement for the Turning Basin Widening Project, which will keep Oakland competitive,” said Walton.
The agreement advances the project into its preconstruction engineering and design phase following years of planning and collaboration.
Lt. Col. Virginia Brickner, commander of the USACE San Francisco District, said the signing represented tangible progress toward construction.
“We are moving forward. We are showing progress,” Brickner said.
Major General Jason Kelly, USACE Deputy Commanding General for Civil and Emergency Operations, said dredging is critical for maritime dominance, supply chains, and economic competitiveness.
“Dredging sustains our national economic infrastructure,” he said. “The future demands more, the taxpayer deserves more, and together we’re going to deliver.”
For U.S. Representative Congresswoman Lateefah Simon (D-CA-12), the Port project will support jobs beyond its completion. “This will impact workers and businesses, and every shipping container represents multiple jobs.”
Oakland Mayor Barbara Lee described Oakland as a gateway to international markets and spoke on earlier efforts to deepen Oakland’s shipping channel to 50 feet. While serving in the California Legislature, Lee helped bring together labor, business, environmental advocates and Port officials to resolve disputes surrounding dredging and environmental protections.
“We want the Port to remain competitive economically,” Lee said, excited about both protecting the environment and generating sustainable jobs in the region. “We want to make sure that we create good-paying union jobs, and that the Port continues to not just survive, but thrive.”
Port of Oakland Executive Director Kristi McKenney said economic growth is dependent on investments in the Oakland Harbor’s infrastructure.
“This investment and staying competitive will fuel our economy for years to come,” said McKenney.
The Port of Oakland, with its partners, supports more than 98,000 regional jobs and $174 billion in annual economic activity. The Port oversees the Oakland Seaport, the Oakland San Francisco Bay Airport (OAK), and nearly 20 miles of waterfront, including Jack London Square.
Black Press
Democratic Clubs Interview Candidates for Oakland School Board
OAKLAND POST — For the first time, the interviews were jointly sponsored by the John George Democratic Club, Wellstone Democratic Renewal Club, Oakland East Bay Democratic Club, Black Women Organized for Political Action (BWOPA), Niagara Democratic Club, Block by Block Organizing Network and Oakland African American Chamber of Commerce.
Local Democratic clubs and community organizations interviewed candidates running for Oakland school board in the November elections, including incumbents Jennifer Brouhard in District 2, Mike Hutchinson in District 4 and Valarie Bachelor in District 6.
For the first time, the interviews were jointly sponsored by the John George Democratic Club, Wellstone Democratic Renewal Club, Oakland East Bay Democratic Club, Black Women Organized for Political Action (BWOPA), Niagara Democratic Club, Block by Block Organizing Network and Oakland African American Chamber of Commerce.
The Democratic clubs interviewed only registered Democrats.
John George and Wellstone endorsed Brouhard and Bachelor. Neither endorsed Hutchinson.
In District 4, Wellstone ranked Sylvia Pfeiffer Williams first and Kathryn Camp second. John George ranked Camp first and Williams second.
Hutchinson, an Oakland native and Oakland public schools graduate, highlighted his record.
“I was in board leadership and chaired the Budget and Finance Committee,” he said. “We passed balanced budgets and paid off the state loan early, which allowed us to finally leave state receivership after 22 years.”
Hutchinson said the district faces a financial crisis requiring changes in board leadership and district policies.
“We need a different majority so we can get back on track, end school closures, and manage our resources better,” he said.
Williams taught adult education in Oakland for 18 years.
Williams said her philosophy “comes from the disability justice world, to center the needs of the most vulnerable. When we center the needs of the most vulnerable, we create environments, systems, and learning experiences in which everyone can thrive.”
Williams framed potential school closures as an equity issue.
“Are we thinking about closing schools up in the hills?” she asked. “Or are we thinking about closing schools where communities are in crisis right now?”
Camp, a Bay Area native and Oakland resident of 25 years, has a son in second grade.
“Our kids are only getting one shot at a great education, and I’m running to bring pragmatic, student-centered leadership that restores trust, builds responsibility, and delivers results for every child,” she said.
On her website, Camp pledged accountability and transparency. “As a proud OUSD parent, I know our schools need more than promises – they need fiscal responsibility, equity, and meaningful action guided by long-term strategy,” she said.
“That means protecting classrooms, supporting teachers, using resources wisely, and making decisions that reflect clear priorities and real accountability,” said Camp. “It also means bringing people together and providing the kind of steady leadership that can navigate complex systems, ask hard questions, and stay grounded in what matters most: student outcomes, thriving schools, and a district that works for the communities it serves.”
Wellstone’s Education Committee said it opposed Hutchinson because he frequently challenged the board majority and superintendent.
“He also claims that the teachers’ contract is illegal that a grand jury should be called. He is not endorsed by the teachers’ union; he has been disruptive and non-collaborative at meetings,” and he has been absent 26% of the time, the committee said.
“He claims that the teachers’ contract is illegal and that a grand jury should be called,” the committee said. “He takes individual credit for accomplishments, including paying the state loan, when in fact these changes came from the work of the entire board, or were the result of following through on policy.”
Next week: District 6 school board candidates.
Black History
Nuna Phillips-McKee Celebrates 100 Years: ‘A Century of Faith, Family and God’s Amazing Grace!’
OAKLAND POST — Nuna’s life has been one of Christian service. A longtime member of Wings of Love Maranatha Ministries, now Incredible Church, she serves as director of Community Services and is actively involved in the church’s Food Ministries.
Nuna Phillips-McKee will reach an extraordinary milestone on Sept. 24 —her 100th
birthday, marking a century filled with faith, family, service, laughter and the amazing grace of God.
Born Sept. 14, 1926, in Oakland, Nuna has witnessed a world of change during her lifetime, yet the values that have guided her remain constant: a deep faith in God, devotion to family, a strong work ethic and a heart for serving others.
She enjoyed a distinguished career as a civil servant for more than 40 years, demonstrating the dedication, dependability and strength that have characterized so much of her life.
Nuna’s life has been one of Christian service. A longtime member of Wings of Love Maranatha Ministries, now Incredible Church, she serves as director of Community Services and is actively involved in the church’s Food Ministries.
Through the years, she has continued to help meet the needs of others—not merely with food, but with kindness, compassion and a genuine desire to serve. Her ministry reflects a simple principle by which she lives: when God blesses you, you bless others.
Nuna is the proud mother of one son, whose memory she carries in her heart, and the beloved grandmother of three grandchildren, as well as six great-grandchildren and one great-great-grandchild.
At 100, she has the rare blessing of seeing several generations of her family carrying forward a legacy that began long ago.
She remains the loving, intelligent, witty, and, when the occasion calls for it, delightfully sassy Nuna that her family and friends know so well. Her contagious laugh, quick wit and youthful spirit have endeared her to generations of relatives, church members and friends.
Nuna was born into the large and loving Phillips family of seven sisters and one brother, with bonds that formed in childhood and have remained precious throughout the decades. Their shared love, faith, and family traditions have continued to be a source of joy, strength and countless treasured memories.
As family and friends gather for this special occasion, they will celebrate far more than a number. They will celebrate 100 years of prayers prayed and answered; 100 years of lessons learned and wisdom shared; 100 years of family, faith, laughter and love; 100 years of serving God and serving others.
Most of all, they will celebrate a life that stands as a testimony to God’s faithfulness through every season.
Nuna’s century-long journey can be summed up in the words chosen to commemorate this remarkable occasion: “100 years of God’s amazing grace.”
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