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The Sickle Cell Warriors Convention

NNPA NEWSWIRE-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.
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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.

The post The Sickle Cell Warriors Convention first appeared on BlackPressUSA.

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COMMENTARY: The National Protest Must Be Accompanied with Our Votes

Just as Trump is gathering election data like having the FBI take all the election data in Georgia from the 2020 election, so must we organize in preparation for the coming primary season to have the right people on ballots in each Republican district, so that we can regain control of the House of Representatives and by doing so, restore the separation of powers and balance that our democracy is being deprived of.

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Dr. John E. Warren Publisher, San Diego Voice & Viewpoint
Dr. John E. Warren, Publisher San Diego Voice & Viewpoint Newspaper. File photo..

By  Dr. John E. Warren, Publisher San Diego Voice & Viewpoint Newspaper

As thousands of Americans march every week in cities across this great nation, it must be remembered that the protest without the vote is of no concern to Donald Trump and his administration.

In every city, there is a personal connection to the U.S. Congress. In too many cases, the member of Congress representing the people of that city and the congressional district in which it sits, is a Republican. It is the Republicans who are giving silent support to the destructive actions of those persons like the U.S. Attorney General, the Director of Homeland Security, and the National Intelligence Director, who are carrying out the revenge campaign of the President rather than upholding the oath of office each of them took “to Defend The Constitution of the United States.”

Just as Trump is gathering election data like having the FBI take all the election data in Georgia from the 2020 election, so must we organize in preparation for the coming primary season to have the right people on ballots in each Republican district, so that we can regain control of the House of Representatives and by doing so, restore the separation of powers and balance that our democracy is being deprived of.

In California, the primary comes in June 2026. The congressional races must be a priority just as much as the local election of people has been so important in keeping ICE from acquiring facilities to build more prisons around the country.

“We the People” are winning this battle, even though it might not look like it. Each of us must get involved now, right where we are.

In this Black History month, it is important to remember that all we have accomplished in this nation has been “in spite of” and not “because of.” Frederick Douglas said, “Power concedes nothing without a struggle.”

Today, the struggle is to maintain our very institutions and history. Our strength in this struggle rests in our “collectiveness.” Our newspapers and journalists are at the greatest risk. We must not personally add to the attack by ignoring those who have been our very foundation, our Black press.

Are you spending your dollars this Black History Month with those who salute and honor contributions by supporting those who tell our stories? Remember that silence is the same as consent and support for the opposition. Where do you stand and where will your dollars go?

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Why Black Parents Should Consider Montessori

BLACKPRESSUSA NEWSWIRE — I have found that there are some educational approaches that consistently provide a safer, more enriching, and more affirmative environment for Black children. The Montessori method, developed by Italian physician Maria Montessori and introduced to the U.S. in the early 20th century, is one such approach.

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By Laura Turner-Essel, PhD

As a mother of four children, I’ve done A LOT of school shopping. I don’t mean the autumn ritual of purchasing school supplies. I mean shopping for schools – pouring over promotional materials, combing through websites, asking friends and community members for referrals to their favorite schools, attending open houses and orientations, comparing curriculums and educational philosophies, meeting teachers and principals, and students who all claim that their school is the best.

But keep in mind – I’m not just a mom of four children. I’m a mom of four Black children, and I’m also a psychologist who is very interested in protecting my little ones from the traumatic experience that school can too often become.

For Black children in the United States, school can sometimes feel more like a prison than an educational institution. Research shows that Black students experience school as more hostile and demoralizing than other students do, that they are disciplined more frequently and more harshly for typical childhood offenses (such as running in the halls or chewing gum in class), that they are often labeled as deviant or viewed as deficient more quickly than other children, that teachers have lower academic expectations of Black students (which, in turn, lowers those students’ expectations of themselves), and that Black parents feel less respected and less engaged by their children’s teachers and school administrators. Perhaps these are some of the underlying reasons that Black students tend to underperform in most schools across the country.

The truth is that schools are more than academic institutions. They are places where children go to gain a sense of who they are, how they relate to others, and where they fit into the world. The best schools are places that answer these questions positively – ‘you are a valuable human being, you are a person who will grow up to contribute great things to your community, and you belong here, with us, exploring the world and learning how to use your gifts.’ Unfortunately, Black children looking for answers to these universal questions of childhood will often hit a brick wall once they walk into the classroom. If the curriculum does not reflect their cultural experiences, the teachers don’t appear to value them, and they spend most of their time being shamed into compliance rather than guided towards their highest potential, well…what can we really expect? How are they supposed to master basic academic skills if their spirits have been crushed?

Here’s the good news. In my years of school shopping, and in the research of Black education specialists such as Jawanza Kunjufu and Amos Wilson, I have found that there are some educational approaches that consistently provide a safer, more enriching, and more affirmative environment for Black children. The Montessori method, developed by Italian physician Maria Montessori and introduced to the U.S. in the early 20th century, is one such approach.

The key feature of Montessori schooling is that children decide (for the most part) what they want to do each day. Led by their own interests and skill levels, children in a Montessori classroom move around freely and work independently or with others on tasks of their own

choosing. The classroom is intentionally stocked with materials tailored to the developmental needs of children, including the need to learn through different senses (sight, touch/texture, movement, etc.). The teacher in a Montessori classroom is less like a boss and more like a caring guide who works with each child individually, demonstrating various activities and then giving them space to try it on their own. The idea is that over time, students learn to master even the toughest tasks and concepts, and they feel an intense sense of pride and accomplishment because they did it by themselves, without pressure or pushing.

I think that this aspect of the Montessori method is good for all kids. Do you remember the feeling of having your creativity or motivation crushed by being told exactly what to do, when to do it, how to do it, and why? The truth is that when presented with a new challenge and then given space, children actually accomplish a lot! They are born with a natural desire to learn. It is that spirit of curiosity, sense of wonder, and excitement to explore that Montessori helps to keep alive in a child. But that’s not the only reason that I think Black parents need to consider Montessori.

Fostering a love of learning is great. But more importantly, I think that Montessori students excel at learning to love. It begins with Montessori’s acknowledgement that all children are precious because childhood is a precious time. In many school systems, Black children are treated like miniature adults (at best) or miniature criminals (at worst), and are subjected to stressful situations that no kids are equipped to handle – expectations to be still and silent for long periods, competitive and high-stakes testing, and punitive classroom discipline. It’s easy to get the sense that rather than being prepared for college or careers, our children are being prepared to fail. Couple this with the aforementioned bias against Black children that seems to run rampant within the U.S. school system, and you end up with children who feel burned out and bitter about school by the time they hit 3rd grade.

In my experience, Montessori does a better job of protecting the space that is childhood – and all the joy of discovery and learning that should come along with that. Without the requirement that students “sit down and shut up,” behavioral issues in Montessori classrooms tend to be non-existent (or at least, the Montessori method doesn’t harp on them; children are gently redirected rather than shamed in front of the class). Montessori students don’t learn for the sake of tests; they demonstrate what they’ve learned by sharing with their teacher or classmates how they solve real-world problems using the skills they’ve gained through reading, math, or science activities. And by allowing children a choice of what to focus on throughout the day, Montessori teachers demonstrate that they honor and trust children’s natural intelligence. The individualized, careful attention they provide indicates to children that they are each seen, heard, and valued for who they are, and who they might become. Now that’s love (and good education).

As a parent, I’ve come to realize that many schools offer high-quality academics. Montessori is no different. Students in Montessori schools gain exposure to advanced concepts and the materials to work with these concepts hands-on. Across the nation, Montessori schools emphasize early literacy development, an especially important indicator of life success for young Black boys and men. Montessori students are provided with the opportunity to be

successful every day, and the chance to develop a sense of competence and self-worth based on completing tasks at their own pace.

But I have also learned that the important questions to ask when school shopping are often not about academics at all. I now ask, ‘Will my children be treated kindly? Will they be listened to? Protected from bias and bullying? Will they feel safe? Will this precious time in their lives be honored as a space for growth, development, awe, and excitement? Will they get to see people like them included in the curriculum? Will they be seen as valuable even if they don’t always ‘measure up’ to other kids on a task? Will they get extra support if they need it? Will the school include me in major decisions? Will the school leaders help to make sure that my children reach their fullest potential? Will the teacher care about my children almost as much as I do?’

Consistently, it’s been the Montessori schools that have answered with a loud, resounding ‘Yes!’ That is why my children ended up in Montessori schools, and I couldn’t be happier with that decision. If you’re a parent like me, shopping for schools with the same questions in mind, I’d urge you to consider Montessori education as a viable option for your precious little ones. Today more than ever, getting it right for our children is priceless.

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LIVE from the NMA Convention Raheem DeVaughn Says The Time Is Now: Let’s End HIV in Our Communities #2

Set against the backdrop of the NMA conference, Executive Officers from the National Medical Association, Grammy Award Winning Artist and Advocate Raheem DeVaughn, and Gilead Sciences experts, are holding today an important conversation on HIV prevention and health equity. Black women continue to be disproportionately impacted by HIV despite advances in prevention options. Today’s event […]

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Set against the backdrop of the NMA conference, Executive Officers from the National Medical Association, Grammy Award Winning Artist and Advocate Raheem DeVaughn, and Gilead Sciences experts, are holding today an important conversation on HIV prevention and health equity.

Black women continue to be disproportionately impacted by HIV despite advances in prevention options. Today’s event is designed to uplift voices, explore barriers to access, and increase awareness and key updates about PrEP, a proven prevention method that remains underutilized among Black women. This timely gathering will feature voices from across health, media, and advocacy as we break stigma and center equity in HIV prevention.

Additional stats and information to know:

Black women continue to be disproportionately affected by HIV, with Black women representing more than 50% of new HIV diagnoses among women in the U.S. in 2022, despite comprising just 13% of women in the U.S.

Women made up only 8% of PrEP users despite representing 19% of all new HIV diagnoses in 2022.

● Gilead Sciences is increasing awareness and addressing stigma by encouraging regular HIV testing and having judgment-free conversations with your healthcare provider about prevention options, including oral PrEP and long-acting injectable PrEP options.

● PrEP is an HIV prevention medication that has been available since 2012.

● Only 1 in 3 people in the U.S. who could benefit from PrEP were prescribed a form of PrEP in 2022.

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