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Martin Center celebrates 50 years of service to sickle cell patients

INDIANAPOLIS RECORDER — The Centers for Disease Control and Prevention (CDC) estimates that about 100,000 Americans have sickle cell disease. The disease occurs in one out of every 365 Black or African American births, and about 1 in 13 Black or African American babies is born with sickle cell trait, meaning the baby inherited the gene from one parent and likely won’t have any of the symptoms of sickle cell disease.

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The Martin Center Sickle Cell Initiative, 3545 N. College Ave., sits in what used to be a duplex. The center, which provides support for people who have sickle cell disease, is celebrating its 50th anniversary this year. (Photo by: Tyler Fenwick)

By Tyler Fenwick

Julie Daniels lucked out when her mother took her to the pediatrician when she all of the sudden couldn’t bear any weight as a 1-year-old, even after learning how to walk. The pediatrician was a hematologist and recognized the signs he saw. He tested Daniels, and sure enough, she was diagnosed with sickle cell disease.

Daniels has Hemoglobin SB+ (beta) thalassemia, to be exact. It’s one of the four main types of sickle cell disease. The disease affects hemoglobin, the protein in red blood cells that carries oxygen to different parts of the body. Symptoms can include anemia, repeated infections and chronic pain.

It’s the pain that has affected Daniels’ life the most. She stopped working in 2015 because the pain was so bad. She’s on disability now, but she said the pain seems to come more often. The worst days — when the pain becomes overpowering and she can’t do anything — can happen as often as three times a week.

Couple that with fatigue, and it’s like your body “just shuts down on you,” Daniels said, and a nap isn’t going to make it any better.

Growing up in Fort Wayne, said she felt “very alone.” She had a cousin with the same disease, but he lived in Maryland. Daniels, who went to Purdue University and got her master’s degree in Indianapolis, started going to the Martin Center Sickle Cell Initiative in 2010. She had never heard of what was then a 41-year-old organization. There wasn’t anything like it around the state.

This year, the Martin Center is celebrating its 50th anniversary. That’s 50 years of supporting a community that for so long has been ignored and stigmatized. There will be a celebration with dinner, music and a silent auction at 6:30 p.m. Sept. 20 at the Willows on Westfield. Tickets are $75 at themartincenter.org.

Go back to 1969, when Father Boniface Hardin and Dr. Raymond Pierce founded the center, and it’s clear why this organization was needed.

“You would find that there really wasn’t much information at all and hardly any interest in sickle cell disease,” said Gary Gibson, president and CEO of the Martin Center, “because it was a disease that seems to affect only Black people, and people of color didn’t matter. It didn’t get the attention that it should get.”

The Centers for Disease Control and Prevention (CDC) estimates that about 100,000 Americans have sickle cell disease. The disease occurs in one out of every 365 Black or African American births, and about 1 in 13 Black or African American babies is born with sickle cell trait, meaning the baby inherited the gene from one parent and likely won’t have any of the symptoms of sickle cell disease.

Daniels knew her husband didn’t have the gene, so they could only pass along the trait to their daughter. Daniels said they talk with her about the possibility of having a partner who also has the trait and potentially passing the disease to her child. When both parents have the trait, there’s a 25% chance their child will have the disease, according to the CDC.

This is part of what the Martin Center has been doing: educating people who have the disease and trait. The organization has programs that not only teach patients about the disease, but also provide services and support such as a food pantry, support groups and financial assistance.

Frank Lloyd, a Martin Center board member and retired physician, understands why it’s important for African Americans to have this kind of intimate meeting space to talk about a disease that many others know so little about.

During his time at IU Health Methodist Hospital, Lloyd saw sickle cell patients whose pain was discounted by other physicians. It’s a well-documented phenomenon in medicine, where white doctors have false beliefs about biological differences between their white and Black patients, leading them to think their Black patients don’t feel as much pain.

The Martin Center is a place where patients can drop that guard and be with others who are also dealing with an invisible disease that doesn’t get as much attention — or funding — as other conditions that are less common.

Gibson, whose wife died from complications with sickle cell disease in 1989, said the next step for the Martin Center hopefully involves expanding. He would like to get up to Gary and Fort Wayne, places that need these kinds of services but don’t have them to the same scale.

He saw what sickle cell disease did to his wife and sees what it’s doing to patients now every day.

“It’s not fair,” Gibson said. “Those who have it didn’t ask for it, and they didn’t do anything to cause it. To me, that’s just not fair.”

Contact staff writer Tyler Fenwick at 317-762-7853. Follow him on Twitter @Ty_Fenwick.

This article originally appeared in The Indianapolis Recorder.

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Remembering George Floyd

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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.

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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.

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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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