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

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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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Recently Approved Budget Plan Favors Wealthy, Slashes Aid to Low-Income Americans

BLACKPRESSUSA NEWSWIRE — The most significant benefits would flow to the highest earners while millions of low-income families face cuts

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By Stacy M. Brown

BlackPressUSA.com Senior National Correspondent

The new budget framework approved by Congress may result in sweeping changes to the federal safety net and tax code. The most significant benefits would flow to the highest earners while millions of low-income families face cuts. A new analysis from Yale University’s Budget Lab shows the proposals in the House’s Fiscal Year 2025 Budget Resolution would lead to a drop in after-tax-and-transfer income for the poorest households while significantly boosting revenue for the wealthiest Americans. Last month, Congress passed its Concurrent Budget Resolution for Fiscal Year 2025 (H. Con. Res. 14), setting revenue and spending targets for the next decade. The resolution outlines $1.5 trillion in gross spending cuts and $4.5 trillion in tax reductions between FY2025 and FY2034, along with $500 billion in unspecified deficit reduction.

Congressional Committees have now been instructed to identify policy changes that align with these goals. Three of the most impactful committees—Agriculture, Energy and Commerce, and Ways and Means—have been tasked with proposing major changes. The Agriculture Committee is charged with finding $230 billion in savings, likely through changes to the Supplemental Nutrition Assistance Program (SNAP), also known as food stamps. Energy and Commerce must deliver $880 billion in savings, likely through Medicaid reductions. Meanwhile, the Ways and Means Committee must craft tax changes totaling no more than $4.5 trillion in new deficits, most likely through extending provisions of the 2017 Tax Cuts and Jobs Act. Although the resolution does not specify precise changes, reports suggest lawmakers are eyeing steep cuts to SNAP and Medicaid benefits while seeking to make permanent tax provisions that primarily benefit high-income individuals and corporations.

To examine the potential real-world impact, Yale’s Budget Lab modeled four policy changes that align with the resolution’s goals:

  1. A 30 percent across-the-board cut in SNAP funding.
  2. A 15 percent cut in Medicaid funding.
  3. Permanent extension of the individual and estate tax cuts from the 2017 Tax Cuts and Jobs Act.
  4. Permanent extension of business tax provisions including 100% bonus depreciation, expense of R&D, and relaxed limits on interest deductions.

Yale researchers determined that the combined effect of these policies would reduce the after-tax-and-transfer income of the bottom 20 percent of earners by 5 percent in the calendar year 2026. Households in the middle would see a modest 0.6 percent gain. However, the top five percent of earners would experience a 3 percent increase in their after-tax-and-transfer income.

Moreover, the analysis concluded that more than 100 percent of the net fiscal benefit from these changes would go to households in the top 20 percent of the income distribution. This happens because lower-income groups would lose more in government benefits than they would gain from any tax cuts. At the same time, high-income households would enjoy significant tax reductions with little or no loss in benefits.

“These results indicate a shift in resources away from low-income tax units toward those with higher incomes,” the Budget Lab report states. “In particular, making the TCJA provisions permanent for high earners while reducing spending on SNAP and Medicaid leads to a regressive overall effect.” The report notes that policymakers have floated a range of options to reduce SNAP and Medicaid outlays, such as lowering per-beneficiary benefits or tightening eligibility rules. While the Budget Lab did not assess each proposal individually, the modeling assumes legislation consistent with the resolution’s instructions. “The burden of deficit reduction would fall largely on those least able to bear it,” the report concluded.

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A Threat to Pre-emptive Pardons

BLACKPRESSUSA NEWSWIRE — it was a possibility that the preemptive pardons would not happen because of the complicated nature of that never-before-enacted process.

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By April Ryan

President Trump is working to undo the traditional presidential pardon powers by questioning the Biden administration’s pre-emptive pardons issued just days before January 20, 2025. President Trump is seeking retribution against the January 6th House Select Committee. The Trump Justice Department has been tasked to find loopholes to overturn the pardons that could lead to legal battles for the Republican and Democratic nine-member committee. Legal scholars and those closely familiar with the pardon process worked with the Biden administration to ensure the preemptive pardons would stand against any retaliatory knocks from the incoming Trump administration. A source close to the Biden administration’s pardons said, in January 2025, “I think pardons are all valid.  The power is unreviewable by the courts.”

However, today that same source had a different statement on the nuances of the new Trump pardon attack. That attack places questions about Biden’s use of an autopen for the pardons. The Trump argument is that Biden did not know who was pardoned as he did not sign the documents. Instead, the pardons were allegedly signed by an autopen.  The same source close to the pardon issue said this week, “unless he [Trump] can prove Biden didn’t know what was being done in his name. All of this is in uncharted territory. “ Meanwhile, an autopen is used to make automatic or remote signatures. It has been used for decades by public figures and celebrities.

Months before the Biden pardon announcement, those in the Biden White House Counsel’s Office, staff, and the Justice Department were conferring tirelessly around the clock on who to pardon and how. The concern for the preemptive pardons was how to make them irrevocable in an unprecedented process. At one point in the lead-up to the preemptive pardon releases, it was a possibility that the preemptive pardons would not happen because of the complicated nature of that never-before-enacted process. President Trump began the threat of an investigation for the January 6th Select  Committee during the Hill proceedings. Trump has threatened members with investigation or jail.

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Reaction to The Education EO

BLACKPRESSUSA NEWSWIRE — Meanwhile, the new Education EO jeopardizes funding for students seeking a higher education. Duncan states, PellGrants are in jeopardy after servicing “6.5 million people” giving them a chance to go to college.

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By April Ryan

There are plenty of negative reactions to President Donald Trump’s latest Executive Order abolishing the Department of Education. As Democrats call yesterday’s action performative, it would take an act of Congress for the Education Department to close permanently. “This blatantly unconstitutional executive order is just another piece of evidence that Trump has absolutely no respect for the Constitution,” said Rep. Maxine Waters (D-CA) who is the ranking member on the House Financial Services Committee. “By dismantling ED, President Trump is implementing his own philosophy on education, which can be summed up in his own words, ‘I love the poorly educated.’ I am adamantly opposed to this reckless action, said Rep. Bobby Scott who is the most senior Democrat on the House Education and Workforce Committee.

Morgan State University President Dr. David Wilson chimed in saying “I’m deeply concerned about efforts to shift federal oversight in education back to the states, particularly regarding equity, justice, and fairness. History has shown us what happens when states are left unchecked—Black and poor children are too often denied access to the high-quality education they deserve. In 1979 then President Jimmy Carter signed a law creating the Department of Education. Arne Duncan, former Obama Education Secretary, reminds us that both Democratic and Republican presidents have kept education a non-political issue until now. However, Duncan stressed Republican presidents have contributed greatly to moving education forward in this country.

During a CNN interview this week Duncan said during the Civil War President Abraham “Lincoln created the land grant system” for colleges like Tennessee State University. “President Ford brought in IDEA.” And “Nixon signed Pell Grants into law.” In 2001, the No Child Left Behind Act was signed into law by President George W. Bush which increased federal oversight of schools through standardized testing. Meanwhile, the new Education EO jeopardizes funding for students seeking higher education. Duncan states, PellGrants are in jeopardy after servicing “6.5 million people” giving them a chance to go to college. Wilson details, “that 40 percent of all college students rely on Pell Grants and student loans.”

Rep. Alma Adams (D-NC) says this Trump action “impacts students pursuing higher education and threatens 26 million students across the country, taking billions away from their educational futures. Meanwhile, During the president’s speech in the East Room of the White House Thursday, Trump criticized Baltimore City, and its math test scores with critical words. Governor West Moore, who is opposed to the EO action, said about dismantling the Department of Education, “Leadership means lifting people up, not punching them down.”

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