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Pfizer, Sickle Cell Advocates Address Disease During Black Press Week
NNPA NEWSWIRE — People with rare diseases, like sickle cell disease, have unique and complex challenges and the Pfizer partnership provides an opportunity for NNPA to inform and educate readers of Black-owned newspapers in more than 70 markets across the country on sickle cell disease, which NNPA President and CEO Dr. Benjamin F. Chavis, Jr., said is an often misunderstood disease that has a profound impact on the health and well-being of those affected.
By Stacy M. Brown, NNPA Newswire Correspondent
@StacyBrownMedia
National Sickle Cell Advocacy Day 2019 is a great time to focus on key legislative issues that are important to individuals and their families who are living with the blood cell disorder, including promoting stable funding for research, better healthcare access, expanded programs and increased education and awareness for the Sickle Cell Disease community and programs throughout the country.
Lori Luck, the global medical director for Pfizer Rare Disease, joined Beverley Frances-Gibson, the president and CEO of the SCD Association of America; and Angie Snyder, a professor at Georgia State University, to discuss the latest in Sickle Cell Disease advocacy during Black Press Week in Washington, D.C.
The discussion came ahead of National Sickle Cell Advocacy Day, which is actually held over two days on April 8 and April 9 at the Kellogg Conference Hotel at Gallaudet University in Washington.
The event features advocacy training and meetings with legislative champions and a collaboration of federal partners, as advocates attempt to raise awareness to the disease which affects about 100,000 Americans and occurs among nearly 1 out of every 365 black or African American births.
According to researchers, the illness occurs among about 1 out of every 16,300 Hispanic American births and about 1 in 13 black or African American babies are born with sickle cell trait, meaning that the individual has inherited the sickle cell gene from one of his or her parents.
“We’re educators and we’re not only educating internal clients but external as well,” said Luck, who noted that Pfizer has partnerships with the Centers for Disease Control and Prevention as well as other organizations.
The company also has a partnership with the National Newspaper Publishers Association (NNPA), a trade association of more than 200 African-American–owned community newspapers from around the United States.
The partnership is a collaboration to raise awareness of sickle cell disease, a lifelong and debilitating genetic disorder that affects red blood cells.
People with rare diseases, like sickle cell disease, have unique and complex challenges and the Pfizer partnership provides an opportunity for NNPA to inform and educate readers of Black-owned newspapers in more than 70 markets across the country on sickle cell disease, which NNPA President and CEO Dr. Benjamin F. Chavis, Jr., said is an often misunderstood disease that has a profound impact on the health and well-being of those affected.
“Together with Pfizer, we look forward to providing sickle cell disease education that can underscore the importance of improving quality of care in the community,” Chavis said.
Snyder, whose work at Georgia State University includes researching and advocating for the sickle cell disease community, said it’s important that everyone is educated.
“We have to continue to study on what works and doesn’t work for people,” she said.
Francis-Gibson said conversations must take place in and outside the home. “Sickle Cell Disease is personal for me because I have a family member who died from sickle cell disease when I was in high school,” Francis-Gibson said.
“We never discussed it and when I was offered my current position I knew it was my calling because if my own family isn’t discussing sickle cell disease, I knew that other families weren’t discussing it either,” she said.
In December, a bi-partisan bill aimed at fighting sickle disease was signed into law by President Donald Trump.
The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 was introduced by Sens. Cory Booker, D-N.J., and Tim Scott, R-S.C., in February 2018 and passed in the Senate in October.
The bill also reauthorizes a current sickle cell disease prevention and treatment program for nearly $5 million each year over the next five years.
“Even though sickle cell disease is the most common inherited blood disorder in our country, research and treatment lags behind that of other chronic illnesses,” Booker said in a statement.
“Our legislation will help find new ways to improve the lives of people suffering from sickle cell disease. It’s time we start treating sickle cell disease as a serious and debilitating illness and allocate adequate resources to monitoring, researching, and treating it,” he said.
Francis-Gibson said advocacy for funding the bill is still needed.
“It’s important everyone comes out during National Sickle Cell Advocacy Day and join me on Capitol Hill because when I’m speaking to the legislators, it’s much better when they look and see all of the people behind me,” she said.
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OP-ED: Oregon Bill Threatens the Future of Black Owned Newspapers and Community Journalism
BLACKPRESSUSA NEWSWIRE — Nearly half of Oregon’s media outlets are now owned by national conglomerates with no lasting investment in local communities. According to an OPB analysis, Oregon has lost more than 90 news jobs (and counting) in the past five years. These were reporters, editors and photographers covering school boards, investigating corruption and telling community stories, until their jobs were cut by out-of-state corporations.

By Dr. Benjamin F. Chavis, Jr.
President and CEO, National Newspaper Publishers Association
For decades, The Skanner newspaper in Portland, the Portland Observer, and the Portland Medium have served Portland, Oregon’s Black community and others with a vital purpose: to inform, uplift and empower. But legislation now moving through the Oregon Legislature threatens these community news institutions—and others like them.
As President and CEO of the National Newspaper Publishers Association (NNPA), which represents more than 255 Black-owned media outlets across the United States—including historic publications like The Skanner, Portland Observer, and the Portland Medium—l believe that some Oregon lawmakers would do more harm than good for local journalism and community-owned publications they are hoping to protect.
Oregon Senate Bill 686 would require large digital platforms such as Google and Meta to pay for linking to news content. The goal is to bring desperately needed support to local newsrooms. However, the approach, while well-intentioned, puts smaller, community-based publications at a future severe financial risk.
We need to ask – will these payments paid by tech companies benefit the journalists and outlets that need them most? Nearly half of Oregon’s media outlets are now owned by national conglomerates with no lasting investment in local communities. According to an OPB analysis, Oregon has lost more than 90 news jobs (and counting) in the past five years. These were reporters, editors, and photographers covering school boards, investigating corruption, and telling community stories, until their jobs were cut by out-of-state corporations.
Legislation that sends money to these national conglomerate owners—without the right safeguards to protect independent and community-based outlets—rewards the forces that caused this inequitable crisis in the first place. A just and inclusive policy must guarantee that support flows to the front lines of local journalism and not to the boardrooms of large national media corporations.
The Black Press exists to fill in the gaps left by larger newsrooms. Our reporters are trusted messengers. Our outlets serve as forums for civic engagement, accountability and cultural pride. We also increasingly rely on our digital platforms to reach our audiences, especially younger generations—where they are.
We are fervently asking Oregon lawmakers to take a step back and engage in meaningful dialogue with those most affected: community publishers, small and independent outlets and the readers we serve. The Skanner, The Portland Observer, and The Portland Medium do not have national corporate parents or large investors. And they, like many smaller, community-trusted outlets, rely on traffic from search engines and social media to boost advertising revenue, drive subscriptions, and raise awareness.
Let’s work together to build a better future for Black-owned newspapers and community journalism that is fair, local,l and representative of all Oregonians.
Dr. Benjamin F. Chavis Jr., President & CEO, National Newspaper Publishers Association
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Hate and Chaos Rise in Trump’s America
BLACKPRESSUSA NEWSWIRE — Tactics ranged from local policy manipulation to threats of violence. The SPLC documented bomb threats at 60 polling places in Georgia, traced to Russian email domains.

By Stacy M. Brown
Black Press USA Senior National Correspondent
The Southern Poverty Law Center has identified 1,371 hate and antigovernment extremist groups operating across the United States in 2024. In its latest Year in Hate & Extremism report, the SPLC reveals how these groups are embedding themselves in politics and policymaking while targeting marginalized communities through intimidation, disinformation, and violence. “Extremists at all levels of government are using cruelty, chaos, and constant attacks on communities and our democracy to make us feel powerless,” said SPLC President Margaret Huang. The report outlines how hard-right groups aggressively targeted diversity, equity, and inclusion (DEI) initiatives throughout 2024. Figures on the far right falsely framed DEI as a threat to white Americans, with some branding it a form of “white genocide.” After the collapse of Baltimore’s Francis Scott Key Bridge, a former Utah legislator blamed the incident on DEI, posting “DEI = DIE.”
Tactics ranged from local policy manipulation to threats of violence. The SPLC documented bomb threats at 60 polling places in Georgia, traced to Russian email domains. Similar threats hit Jewish institutions and Planet Fitness locations after far-right social media accounts attacked them for trans-inclusive policies. Telegram, which SPLC describes as a hub for hate groups, helped extremists cross-recruit between neo-Nazi, QAnon, and white nationalist spaces. The platform’s lax moderation allowed groups like the Terrorgram Collective—designated terrorists by the U.S. State Department—to thrive. Militia movements were also reorganized, with 50 groups documented in 2024. Many, calling themselves “minutemen,” trained in paramilitary tactics while lobbying local governments for official recognition. These groups shared personnel and ideology with white nationalist organizations.
The manosphere continued to radicalize boys and young men. The Fresh & Fit podcast, now listed as a hate group, promoted misogyny while mocking and attacking Black women. Manosphere influencers used social media algorithms to drive youth toward male-supremacy content. Turning Point USA played a key role in pushing white nationalist rhetoric into mainstream politics. Its leader Charlie Kirk claimed native-born Americans are being replaced by immigrants, while the group advised on Project 2025 and organized Trump campaign events. “We know that these groups build their power by threatening violence, capturing political parties and government, and infesting the mainstream discourse with conspiracy theories,” said Rachel Carroll Rivas, interim director of the SPLC’s Intelligence Project. “By exposing the players, tactics, and code words of the hard right, we hope to dismantle their mythology and inspire people to fight back.”
Click here for the full report or visit http://www.splcenter.org/resources/guides/year-hate-extremism-2024.
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