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New Parents and a Newborn with Sickle Cell Disease: What Now?
NNPA NEWSWIRE — In this article, I’d like to introduce you to TaLana Hughes, a mother of three who is also the executive director of the Sickle Cell Disease Association of Illinois (SCDAI). TaLana has one child with Sickle Cell Disease and two children with the sickle cell trait.
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Oakland Post
Ask Dr. Kevin
By Dr. Kevin Williams , Chief Medical Officer for Rare Disease at Pfizer
The “Ask Dr. Kevin” series is brought to you by Pfizer Rare Disease in collaboration with the National Newspaper Publishers Association (NNPA) to increase understanding of sickle cell disease.
Dr. Kevin Williams is the Chief Medical Officer for Rare Disease at Pfizer where he leads a Medical Affairs organization of approximately 150 medical colleagues around the globe. He pursued medicine after being inspired by his father’s work as a general practitioner in his hometown of Baton Rouge, Louisiana. Dr. Kevin is passionate about raising awareness and increasing understanding of rare diseases, such as sickle cell disease, in the African American community.
For the last two years, I’ve been honored to talk with you about sickle cell disease (SCD) through this column, sharing important information and my perspectives as a medical professional. Now, as the “Ask Dr. Kevin” series enters its third year, I wanted to change things a bit by letting you also hear directly from those who matter most—people living with SCD and their caregivers.
In this article, I’d like to introduce you to TaLana Hughes, a mother of three who is also the executive director of the Sickle Cell Disease Association of Illinois (SCDAI). TaLana has one child with SCD and two children with the sickle cell trait.
As TaLana knows from both personal experience and through her work with SCDAI, learning that your child has SCD can feel overwhelming and scary. While family and friends can be an important source of support, they may not always know the best way to help—and parents may find it hard to explain what they need.
In order to help people better understand what it’s like to be a parent of a newborn with SCD, and how family and friends can be most helpful, TaLana and I share our thoughts below on some of the most common questions we’ve been asked about the topic.
What are the biggest fears and challenges parents face upon learning their child has SCD?
TaLana: Immediately after my child received the diagnosis, my husband and I experienced an initial wave of shock and fear. It became suddenly apparent that both of us have the sickle cell trait which we passed down to our child. After the initial shock wore off, a million questions started to run through our minds, and we wondered what this would ultimately mean for our daughter.
Dr. Kevin: I know that for many parents, an SCD diagnosis can certainly be overwhelming, and I see how parents may fear the worst. However, it’s important to know that in recent years we’ve seen advances in understanding and scientific breakthroughs that are potentially paving the way for better care of people with SCD.
I also can’t stress enough to new parents the importance of setting up a healthcare team for their child as soon as possible. Receiving care early and often can help reduce the impacts and complications of the disease. SCD takes a toll on all systems of the body, so having a team made up of a pediatric hematologist, primary care doctor, and other specialists, such as an eye doctor, pulmonologist, cardiologist, and dentist, is key to the health of the child.
What are some tips for helping parents cope with the news?
TaLana: I know that I needed time to digest the news to really understand how the diagnosis would impact our child and family. Once I had a stronger understanding of the disease and how it would manifest over time as my child grew, I started to have a better idea of the support needed from my family and our local community.
Dr. Kevin: I’ve seen incredible connections and support systems form when parents of a child with SCD talk with other parents going through the same thing. There’s a certain comfort that comes from talking to those who have “been there, done that.” Parents can meet other families through local community groups, online platforms like oneSCDvoice*, which includes curated content and a wealth of information for those in the SCD community, and the Sickle Cell Disease Association of America (SCDAA), which publishes a calendar of local SCD events around the country.
How can family and friends offer support?
TaLana: I tell parents of children with SCD to educate their loved ones about the disease and to communicate how it affects your child. Teaching others about the condition gives me the opportunity to explain what kind of specific support I need. It also allows my family and friends to figure out how to best provide support—whether it be a ride to an appointment, a change of clothes for an overnight stay in the hospital, or help with small chores at home.
Dr. Kevin: I also encourage family members and friends to learn as much as they can on their own, because there are still a number of misperceptions about the disease. For example, the belief that a baby born with SCD will die before reaching adulthood. As I mentioned in a previous article, this is a myth! The majority of children with SCD live to adulthood, thanks to advances in SCD care. However, the life expectancy of someone with SCD in the US is only between 40 and 60 years, compared to average US life expectancy of 78.8 years. By understanding the truths about SCD, family and friends are in a better position to provide meaningful support and be allies.
What tools are most helpful for new parents caring for their child with SCD?
TaLana: I always carry a notebook with me so I can take notes and keep track of my child’s “baseline” and SCD history to see how the disease manifests over time. I have an overnight bag in my trunk that includes a change of clothes and snacks. I carry a thermometer in my purse to take my child’s temperature and an incentive spirometer to help facilitate stronger breathing. I’ve also joined a group chat with other parents who have children with SCD, and this has been one of my most important tools for connecting with and learning from other parents who share this experience.
Dr. Kevin: These are great suggestions. I would also encourage parents to connect with their local SCD organization, like an SCDAA local chapter. With a disease like SCD, which is rare in the US and often misunderstood, connecting with others who have similar experiences and challenges is so important for building your support system.
Do infants experience pain crises? What are the warning signs? What is your best advice for new parents when it comes to handling a newborn having a crisis?
TaLana: Yes, infants can have pain crises. However, because they can’t communicate with words and explain any pain they are experiencing, recognizing pain crises can be difficult. In my own experience, the first warning signs are usually dactylitis, where the hands and feet begin to swell, and a fever. However, because new parents usually pay attention to anything out of the ordinary seen in their newborn, they often are able to notice how their own child displays warning signs.
When it comes to noticing something out of the ordinary in my child, I always play it safe. I also find it really beneficial to speak with other parents with children who have SCD and to learn about what they see in their own children and discuss how they’ve handled episodes of pain.
Dr. Kevin: It’s also important for parents to understand that pain crises are unfortunately a universal experience for people with SCD. Crises typically manifest in infants aged six months and older, and they are often unpredictable and can occur up to several times a year. So, to TaLana’s point, learning to recognize what a pain crisis looks like in their child will help parents know when to seek help.
What do babysitters or other caregivers need to know?
TaLana: I make sure other caregivers and babysitters know about my child’s personal regimens and what to do in case of an emergency. I share important pointers, like to make sure my child is hydrated and never around smoke, which can increase the risk of Acute Chest Syndrome (ACS), a bout of pneumonia or a serious lung condition due to the sickling of red blood cells, in people with SCD.
Lastly, I make sure they know how special my child is and all the wonderful qualities she has. I tell them her likes and dislikes, hobbies and interests, and what makes her laugh. Having SCD may be a normal part of my child’s life, but I make sure she is not defined by her condition.
Dr. Kevin: I agree wholeheartedly. Children with SCD are children first and foremost. While the disease affects them, it certainly does not define them—nor should SCD or any disease define the person who has it.
For more information about parenting a child with SCD, check out “A Parents Handbook for Sickle Cell Disease” and the CDC’s “5 Facts You Should Know about SCD.”
Keep up to date on Pfizer’s SCD efforts by visiting our page here. You can also follow Pfizer on Facebook and Twitter.
*Supported by Pfizer
About Dr. Kevin Williams
Dr. Kevin Williams is the Chief Medical Officer (CMO) for Pfizer Rare Disease. In this role, he leads a Medical Affairs organization of approximately 150 medical colleagues around the globe supporting Pfizer’s efforts and portfolio in Rare Disease. Dr. Kevin joined Pfizer in January 2004 as a Director of Regional Medical & Research Specialist working in the HIV disease area. After moving into a Team Leader position in July 2005, he served in various leadership roles during his career at Pfizer. Dr. Kevin moved into his current Rare Disease CMO position in May 2016.
Dr. Kevin received his medical degree from the UCLA School of Medicine and is board certified in Internal Medicine. Following a 2-year fellowship in Health Services Research at UCLA and a brief academic career as an Instructor of Medicine at the UCLA School of Medicine, he spent 8 years in private practice caring for HIV-positive patients while maintaining an academic appointment at the UCLA School of Medicine as an Assistant Clinical Professor of Medicine. In addition to his medical degree, Dr. Kevin has a Master’s in Public Health from the UCLA School of Public Health and a Juris Doctorate from Harvard Law School.
Oakland Post
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COMMENTARY: Women of Color Shape Our Past and Future
MINNESOTA SPOKESMAN RECORDER — Every March, Women’s History Month invites us to pause and honor the women whose courage, intellect, and leadership have shaped our world. This year, that invitation feels especially urgent. We are living in a time when history is being rewritten, when DEI is being recast as a threat, and when the stories we choose to uplift matter more than ever. The stories of women of color must be centered, celebrated, and carried forward with intention.
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March 9, 2026By
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Women of Color Leadership Shapes the Legacy of Women’s History Month
By Dr. Sharon M. Holder | Minnesota Spokesman Recorder
Women’s History Month offers an opportunity to recognize the enduring impact of women of color leadership across history and in the present day. From Harriet Tubman and Shirley Chisholm to today’s leaders in science, politics and culture, women of color continue to shape movements, institutions and communities through courage, collaboration and vision.
Every March, Women’s History Month invites us to pause and honor the women whose courage, intellect, and leadership have shaped our world. This year, that invitation feels especially urgent. We are living in a time when history is being rewritten, when DEI is being recast as a threat, and when the stories we choose to uplift matter more than ever. The stories of women of color must be centered, celebrated, and carried forward with intention.
For centuries, women of color have been architects of progress, even when history tried to confine them to the margins. They have led movements, built institutions, transformed culture, and expanded the boundaries of justice, leadership, and community. Their contributions are not postscripts; they are landmarks. Yet too often, their brilliance has been acknowledged only in hindsight. Women’s History Month offers a chance to correct that imbalance, not only by remembering the past, but by recognizing their leadership unfolding before us.
This legacy lives in Harriet Tubman, whose courage and strategic brilliance transformed the Underground Railroad into one of the boldest freedom operations in American history. In Barbara Jordan, whose moral clarity reshaped the nation’s understanding of justice and constitutional responsibility. In Madam C. J. Walker, expanding both the beauty industry and the economic horizons of Black women. It dances in Josephine Baker, who challenged racism and resisted fascism. In Ida B. Wells and Dolores Huerta, who wielded truth and determination in pursuit of justice. In Chien-Shiung Wu, whose experiments altered science, and Shirley Chisholm, whose political courage expanded the very definition of leadership. These women did more than break barriers; they built new worlds.
A powerful throughline in the leadership of women of color is how they lead: collaboratively, creatively, relationally, and with deep responsibility to community. Their leadership is grounded not in hierarchy but in connection, in the belief that progress is something we build together.
We see this in Kamala Harris, whose presence expands the boundaries of possibility; in Ketanji Brown Jackson; in Oprah Winfrey; and in Toni Morrison, who insisted that the interior lives of Black women are essential to the human story. It resonates in Simone Biles and Serena Williams, redefining strength through excellence and self-belief.
Today, women of color continue to drive breakthroughs in medicine, technology, the arts, politics, and environmental justice. Their leadership appears not only in boardrooms or public office, but in mentorship, advocacy, and the daily navigation of systems never designed for them. The spirit shines in Mae Jemison and Ellen Ochoa; in Michelle Obama; and in the brilliance of Katherine Johnson, Dorothy Vaughan, Mary Jackson, and Christine Darden, whose work helped launch a nation into space.
Celebration is important, but it is not enough. Honoring women of color requires intentional action rooted in equity. It means creating environments where their voices are valued, challenging the biases that shape who is recognized, and ensuring progress is shared.
As we celebrate Women’s History Month, let us honor women of color not as symbols, but as leaders whose work continues to guide us. When we uplift women of color, we honor history and shape the future.
Dr. Sharon M. Holder lives in South Carolina. She holds a PhD/MPhil in Gerontology from the Center for Research on Aging at the University of Southampton, UK; a Master of Science in Gerontology from the Institute of Gerontology at King’s College London, UK; and a Master of Social Work from the Graduate College of Social Work at the University of Houston, Texas.
Dr. Holder discovered her love of poetry at the University of Houston–Downtown, where she published in The Bayou Review and the Anthology of Poetry. Today, she writes poetry as a practice of gratitude alongside her academic research.
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#NNPA BlackPress
Woman’s Search for Family’s Roots Leads to Ancestor John T. Ward – A Successful Entrepreneur and Conductor on the Underground Railroad
THE AFRO — For years, she wanted to know more about her ancestor John T. Ward, she said, and her curiosity eventually became an obsession, leading her to become the genealogist for her family. And so, for more than a decade, she set out to trace her family’s roots and discovered a story that would change her life and the way she viewed American history.
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1 week agoon
March 9, 2026By
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By D. Kevin McNeir | Special to The AFRO
Shanna Ward, the owner of a publishing company and insurance agency located in Columbus, Ohio, said the elders in her family often say she inherited her entrepreneurial spirit from one of their ancestors – a formerly enslaved child from Virginia whose freedom came through manumission in 1827.
For years, she wanted to know more about her ancestor John T. Ward, she said, and her curiosity eventually became an obsession, leading her to become the genealogist for her family. And so, for more than a decade, she set out to trace her family’s roots and discovered a story that would change her life and the way she viewed American history.
John T. Ward would help others secure their freedom and justice in his roles as a conductor on the Underground Railroad, an abolitionist, and political activist. But realizing that economic freedom was essential to his and his family’s survival, he and his son founded the Ward Transfer Line in 1881 (now E.E. Ward Moving) – one of America’s oldest Black-owned businesses. While it has transferred ownership, the business remains in operation today.
Shanna Ward recently published a book about her ancestor, “The Bequest of John T. Ward,” which she hopes can be added to other unheralded tales of Black resistance that occurred during America’s antebellum period.
“Originally, I just wanted to write a 100-page story when I first began digging and was encouraged after I found a copy of a will dated 1827 which included him and was a rare example of a mass manumission,” Shanna Ward said. “Three of the slaves, including John’s grandfather, were given about 294 acres of land in the will, but all the former slaves were supposed to remain on the plantation until their 21st birthday. Some refused to remain. That’s how our family got to Ohio.”
Ward said she learned that newly freed Blacks, including her ancestors in Ohio, had to fend for themselves and often did so with amazing results given the obstacles they faced.
“In those days there were no civil rights organizations, and in local communities, Blacks formed and supported Black-owned businesses, took their own census recordings, and became involved in local politics – all without White involvement,” she said.
BOOK COVER: The cover of the book “The Bequest of John T. Ward,” written by Shanna Ward about her ancestor who, as a child, was granted his freedom in 1827 and went on to become a successful business owner in Ohio, a political activist, and a conductor on the historic Underground Railroad.
“There is part of Ohio where, during the days of slavery, if you successfully crossed the river you were free,” she said. “That was where Black life began – across the river in freedom. When we understand ourselves as more than property and uncover tales of survival which are the foundation of our legacy, then we can better understand who we are and what our ancestors endured. We are stronger than we are often led to believe.”
Efforts among African Americans to learn their family roots have increased over the past several decades, particularly given the success of the PBS documentary, “Finding Your Roots,” hosted and narrated by Harvard University professor Dr. Henry Louis Gates Jr.
On the show’s website, Gates said he developed the show in 2012 in efforts to continue his quest to “get into the DNA of American culture.”
In each episode, celebrities view ancestral histories and share their emotional experience with viewers. Gates attributes the success of the show to a significant surge in interest among Black Americans in tracing their family roots and a desire to reconnect with ancestral history that was severed by slavery.
JOHN T. WARD: John T. Ward, the historic patriarch in a family whose roots can be traced to the days of slavery in Virginia, is the subject of a new book written by a member of his proud family, Shanna Ward, called “The Bequest of John T. Ward.”
“Advancements in DNA testing have increased accessibility of records and led to a cultural push to reclaim identity beyond the ‘brick wall’ of 1870,” said Gates who noted that the 1870 U.S. Census represents the first time former slaves were listed by name and, unfortunately, serves as the point where records of their lives often stop and cannot be traced any earlier.
In a recent paper published in the journal “American Anthropologist,” University of Illinois Urbana-Champaign anthropology professor LaKisha David posits that by using genetic genealogy, African Americans now have the real possibility of restoring family narratives that were disrupted, severed and destroyed by institutional slavery.
“For African Americans who have grown up with a sense of ancestral loss and disconnection, this reclamation of family history is deeply humanizing and healing,” she writes. “It replaces the genealogical unknown with tangible knowledge of ancestral histories and kinship ties.
“Identifying African ancestors and living relatives is an act of restorative justice. It is ultimately about (re)claiming the humanity, dignity, and agency of enslaved Africans and their descendants, which is an essential component of repairing the harms of slavery.”
Ward said by uncovering her family’s truth, she has established a platform for education and empowerment for herself, her children, and today’s youth.
“I realized how important it is to pass down our own stories to the next generation,” Ward said. “There’s so much our children need to know about the Underground Railroad, the quilt codes created by Black women, and other examples of unrecorded heroics and bravery exhibited by Black men and women. Their collective efforts led to the end of Jim Crow laws and the securing of equal rights in the U.S. Constitution for African Americans. If you look hard enough, I believe everyone has someone like Harriet Tubman or Frederick Douglass in their family.”
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#NNPA BlackPress
Advocates Raise Alarm Over ICE Operation, MOU and Detention Risks in Baltimore County
THE AFRO — “This is highly problematic given many of the charges that land people in county correctional facilities to begin with are for misdemeanors of which they may not even ultimately be proven guilty and convicted,” said Cathryn Ann Paul Jackson, public policy director for We Are CASA. “It results in a subversion of the local criminal justice system as a means to further racial profiling and do ICE’s dirty work.”
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1 week agoon
March 9, 2026By
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By Megan Sayles | AFRO Staff Writer
msayles@afro.com
As U.S. Immigration Customs and Enforcement (ICE) operations intensify nationwide, community organizations have become the eyes and ears of their neighborhoods—monitoring the agency’s presence and alerting residents to protect themselves and their neighbors.
In Baltimore County, nonprofits like We Are CASA have observed a spectrum of enforcement actions.
“We have seen a range of activity, including traffic stops and ICE showing up in neighborhoods or in seeming response to tips,” said Cathryn Ann Paul Jackson, public policy director for We Are CASA. “Beyond actual ICE activity in Baltimore County, we have seen many detentions of Baltimore County residents across the DMV, as community members tend to travel across counties and cities for work.”
We Are CASA, a national nonprofit headquartered in Maryland, is dedicated to empowering and improving the quality of life for working-class Black, Latino, Afro-descendent, Indigenous and immigrant communities. Jackson’s personal connection to this mission led her to the organization. A daughter of immigrants from Guyana and Trinidad, she said she grew up witnessing firsthand how immigration policy can define families’ safety, opportunity and sense of belonging.
She said the locations and times of ICE operations in Baltimore County have varied over time.
“We have consistently seen ICE arrest people at their check-in appointments, which were ironically created as an alternative to detention and are now being abused to trap people into custody,” said Jackson. “For a period of time, we were witnessing a significant amount of arrests along the Baltimore-Washington Parkway by U.S. Park Police, who were using a previously rarely enforced law against driving commercial vehicles on this road as a pretext to profile immigrant drivers, detain them and hand them over to ICE.”
Last fall, Baltimore County entered into a Memorandum of Understanding (MOU) with ICE, removing the locality from the Department of Justice’s (DOJ) sanctuary jurisdictions list and formalizing a policy for notifying ICE before the release of inmates with federal immigration detainers or judge-signed warrants.
The agreement codified an existing practice within the Baltimore County Department of Corrections. The MOU is not a 287(g) agreement, which is a partnership between local law enforcement and ICE to delegate immigration enforcement authority to police officers. Those agreements were banned by the state of Maryland on Feb. 17.
However, Jackson criticized the policy memorialized in the MOU, saying that although it is carefully drafted to avoid legal violations, it effectively allows detention centers to hold people past their court-ordered release so that ICE can take them into custody.
“This is highly problematic given many of the charges that land people in county correctional facilities to begin with are for misdemeanors of which they may not even ultimately be proven guilty and convicted,” said Jackson. “It results in a subversion of the local criminal justice system as a means to further racial profiling and do ICE’s dirty work.”
Baltimore County has said it entered into the MOU in an effort to preserve its access to federal funding. The locality explained its reasoning on a FAQ page about its removal from the DOJ’s sanctuary jurisdictions list.
“Inclusion on DOJ’s list could risk significant federal funding, on which the county and constituents depend,” the entry read. “Signing the MOU ensures that the county avoids risks to federal funding that is used to provide needed services.”
Baltimore County’s removal is not unique, as neither Maryland nor any of its counties appear on the DOJ’s list. Still, community members worry that the county’s MOU with ICE could lead to wrongful detentions and the misidentification of residents.
Immigration detainers are not always confirmation of a person’s immigration status—or lack thereof. They are requests by ICE that can be issued without a judicial determination and do not, on their own, establish a person’s legal status.
“We’re very concerned about errors occurring here in the county because of the amped up nature of this mass deportation push,” said Patterson. “This is a replacement theory-driven immigration policy. That means that at the same time we are importing White South African Afrikaaners—who at one time essentially colonized South Africa and oppressed Black South Africans—we are fast deporting people of color. All of us who are the minority can be mistaken for ‘unlawful immigrants.’”
The recent escalation in Minneapolis has heightened Patterson’s concern. He said the city has effectively been made a battleground.
Patterson said the Baltimore County NAACP wants the public to recognize that ICE operates as a militarized organization, unlike local police. He urged people to consider avoiding areas where ICE is active whenever possible and to exercise caution if they encounter agents. If approached, Patterson stressed that people verify warrants are properly signed and directed at them, assert their right to remain silent and contact an attorney before answering questions or consenting to searches.
He also encouraged residents to notify the Baltimore County NAACP of any encounters with ICE.
“We don’t want to wait for Minnesota in Maryland before speaking out about this,” said Patterson. “We want to equip our people to protect themselves behaviorally, consciously and conscientiously because these things are coming to pass. The imprint is among us and we need, therefore, to be aware.”
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