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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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7 years agoon
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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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Black Artists in America, Installation Three Wraps at the Dixon Gallery and Gardens
TRI-STATE DEFENDER — With 50+ paintings, sculptures and assemblages, the exhibit features artists like Varnette Honeywood from Los Angeles, whose pieces appeared in Bill Coby’s private collection (before they were auctioned off) and on “The Cosby Show.” Also included are works by Alonzo Davis, another Los Angeles artist who opened one of the first galleries there where Black Artists could exhibit.
Published
2 weeks agoon
March 24, 2026By
admin
By Candace A. Gray | Tri-State Defender
The tulips gleefully greet those who enter the gates at the Dixon Gallery & Gardens on an almost spring day. More than 650,000 bulbs of various hues are currently on display. And they are truly breathtaking.
Inside the gallery, and equally as breathtaking, is the “Black Artists in America, From the Bicentennial to September 11” exhibit, which runs through Sunday, March 29. This is the third installment of a three-part series that started years ago and illustrates part of the Black experience through visual arts in the 20th century.
“This story picks up where part two left off,’’ said Kevin Sharp, the Linda W. and S. Herbert Rhea director for the Dixon. “This era is when we really start to see the emergence of these important Black artists’ agency and freedom shine through. They start to say and express what they want to, and it was a really beautiful time.”
With 50+ paintings, sculptures and assemblages, the exhibit features artists like Varnette Honeywood from Los Angeles, whose pieces appeared in Bill Coby’s private collection (before they were auctioned off) and on “The Cosby Show.” Also included are works by Alonzo Davis, another Los Angeles artist who opened one of the first galleries there where Black Artists could exhibit.
“Though [Davis] was from LA, he actually lived in Memphis for a decade,” said Sharp. “He was a dean at Memphis College of Art, and later opened the first gallery in New York owned and operated by black curators.”
Another featured artist is former NFL player, Ernie Barnes. His work is distinctive. Where have you seen one of his most popular paintings, Sugar Shack? On the end scene and credits of the hit show “Good Times.” His piece Saturday Night, Durham, North Carolina, 1974 is in this collection.
Memphis native James Little’s “The War Baby: The Triptych” is among more than 50 works featured in “Black Artists in America, From the Bicentennial to September 11” at the Dixon Gallery & Gardens, the final installment of a three-part series highlighting the impact and evolution of Black artists through 2011.
The exhibit features other artists with Memphis ties, including abstract painter James Little, who was raised in a segregated Memphis and attended Memphis Academy of Art (before it was Memphis College of Art). He later moved to New York, became a teacher and an internationally acclaimed fixture in the art world in 2022 when he was named a Whitney Biennial selected artist at the Whitney Museum of American Art in New York.
Other artists like Romare Bearden, who had a Southern experience but lived up North, were featured in all three installments.
“During this period of time, he was a major figure,” said Sharp. “He wrote one of the first books on the history of African American art during a time when there were more Black academics, art teachers, more Black everything!”
Speaking of Black educators, Sharp said the head curator behind this tri-part series and Dixon’s partner in the arts is Earnestine Jenkins, Ph.D., an art history professor at the University of Memphis, who also earned a Master of Arts degree from Memphis State University (now UofM). “We began working with Dr. Jenkins in 2018,” he said.
Sharp explained that it takes a team of curators, registrars, counterparts at other museums, and more, about three years to assemble an exhibit like this. It came together quite seamlessly, he added. Each room conjured up more jaw-dropping “wows” than the one before it. Each piece worked with the others to tell the story of Black people and their collective experience during this time period.
One of the last artists about whom Sharp shared information was Bettye Saar, who will turn 100 years old this year. She’s been working in Los Angeles for 80 years and is finally getting her due. Her medium is collages or assemblages, and an incredible work of hers is on display. She’s married to an artist and has two daughters, also artists.
The exhibit catalogue bears some of these artists’ stories, among other scholarly information.
The exhibit, presented by the Joe Orgill Family Fund for Exhibitions, is culturally and colorfully rich. It is a must see and admission to the Dixon is free.
Visit https://www.dixon.org/ to learn more.
Fun Facts: An original James Little design lives in the flooring of the basketball court at Tom Lee Park, and he makes and mixes his own paint colors.
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#NNPA BlackPress
Grief, Advocacy, and Education: A Counselor Reflects on Black Maternal Health
SAN DIEGO VOICE & VIEWPOINT — Last month healthcare leaders, birth workers, and community members gathered to honor the legacy of Charleston native Dr. Janell Green Smith, a nurse-midwife and doctor of nursing practice who died in January from childbirth complications. She had participated in more than 300 births and specialized in helping Black women give birth safely.
Published
2 weeks agoon
March 24, 2026By
admin
By Jennifer Porter Gore | Word-In-Black | San Diego Voice and Viewpoint
In 2024, the number of U.S. mothers who died as a result of pregnancy or childbirth dropped compared to 2023. But while slightly fewer Black mothers died that year, they still had three times the mortality rate of white women.
South Carolina’s rates of maternal deaths outpaced even the national rates. In fact, the state’s overall rate of maternal deaths between 2019 and 2023 was higher than all but eight states and the District of Columbia.
Last month healthcare leaders, birth workers, and community members gathered to honor the legacy of Charleston native Dr. Janell Green Smith, a nurse-midwife and doctor of nursing practice who died in January from childbirth complications. She had participated in more than 300 births and specialized in helping Black women give birth safely.
Her death shocked the community and her colleagues who are determined to address concerns about Black maternal health. The event also covered the importance of protecting mental health during grief and of men’s role in solving the maternal health crisis.
As both a therapist and a father, Lawrence Lovell, a licensed professional counselor and founder of Breakthrough Solutions, discussed ways the event’s attendees could process their grief over Green Smith’s death. He also shared ways male partners can advocate for women’s maternal health during pregnancy and childbirth.
Lovell spoke not just as a therapist but also as a father whose own family had briefly crossed paths with Green Smith. The event, he said, emerged organically from a moment of collective mourning.
Despite the grief, “it was still, like, a really beautiful event, a much-needed event, and it almost felt like we were all giving each other a collective family hug,” says Lovell.
His connection to Green Smith, Lovell says, was brief but meaningful during his wife’s pregnancy with their second child. Green Smith was practicing at the same birthing center where they had their child. She began practicing in Greenville a short time later.Even that short connection carried significance for Lovell, given the small number of Black maternal health professionals.
Lovell did not initially plan to become a mental health practitioner; he chose the career path after graduating from college, when someone suggested he consider psychology. His interest deepened when he noticed how few Black men work in mental health.
“Being Black man and playing football in college, there weren’t a lot of people that look like me talking about mental health,” says Lovell. “[I wanted] to give people that look like me an opportunity to work with someone that looks like them.”
Working with Expectant and New Parents
Lovell often counsels couples preparing for parenthood by, helping partners understand what a successful pregnancy, childbirth, and postpartum recovery look like. That often means helping women manage postpartum depression.
As a man, Lovell says, it’s “humbling” that a woman “just trusts me enough to work with me through their pregnancy or their postpartum recovery.”
In his work, Lovell has noticed how few men understand pregnancy before they experience it with their partner. Because early pregnancy symptoms are often invisible, he says, men may underestimate how much support a mom-to-be actually needs.
“Sometimes they may not realize they don’t know much about pregnancy and what to expect in those three trimesters,” Lovell says. “I tell a lot of the men that just because you can’t see [she’s pregnant] doesn’t mean that she won’t appreciate your intense support in that first trimester.”
Education about pregnancy and postpartum recovery, he says, can change how men support their partners.
Teaching Advocacy in the Delivery Room
Another major focus of Lovell’s counseling is preparing men to advocate for mothers during labor.
“Helping men understand what pregnancy looks like: what delivery is going to look like, and what are the realistic expectations that I should have of myself in postpartum,” he says.
Lovell encourages partners to be honest about their expectations for what will happen during delivery. He helps them prepare for the big day by discussing the birth plan and knowing how to quickly recognize problems. Clear communication, he says, prevents misunderstandings.
He regularly trains men to ask their partners detailed questions about their expectations during and after pregnancy. Advocacy in medical settings can be especially important and requires attention to details the mother may not be able to address.
“It’s always important to fine-tune things and truly understand what helps your partner feel most supported,” Lovell says. “Instead of guessing, you should ask.”
Lovell recalls a moment during the birth of his first child when he had to take that role.
During the delivery, “I felt like something wasn’t as sanitary as I’d like it to be,” he says. “I asked, ‘Hey, can you switch those out? Can you change your gloves?’”
Lovell has a succinct but powerful message he regularly shares with clients’ families, and he shared it with attendees at last month’s event.
“Just to believe women,” he says. “I’ve worked with different couples, and sometimes I’m not really sure that there’s enough empathy from the men.”
That includes how women express pain.
“If a woman says, ‘my pain is at a nine,’ just because how you would express yourself at a nine is different than how she’s expressing herself at [that level] doesn’t mean you shouldn’t believe her,” he says.
Empathy, he says, can change outcomes far beyond the delivery room.
“We’ve got to believe women when they’re talking about their experiences and their feelings and their pain,” he says. “I think there’s a lot that we can prevent if we empathize better.”
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#NNPA BlackPress
Future of Florida’s Black History Museum in Limbo
JACKSONVILLE FREE PRESS — A proposal sponsored by Tom Leek, a Republican from Ormond Beach, has now passed the Senate in back-to-back legislative sessions. But the House version, filed by Kiyan Michael, a Jacksonville Republican, did not receive final approval in either year, effectively stalling the effort.
Published
2 weeks agoon
March 24, 2026By
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Jacksonville Free Press
Plans to establish a long-awaited Black history museum in Florida are once again on hold after legislation needed to advance the project failed to clear the state House for a second consecutive year, despite repeated approval in the Senate.
A proposal sponsored by Tom Leek, a Republican from Ormond Beach, has now passed the Senate in back-to-back legislative sessions. But the House version, filed by Kiyan Michael, a Jacksonville Republican, did not receive final approval in either year, effectively stalling the effort.
Under Florida law, identical or similar bills must pass both chambers before heading to the governor’s desk. Without House approval, the legislation has been unable to move forward, leaving the project in limbo. Long journey, contested location.
The proposed museum, formally known as the Florida Museum of Black History, has been years in the making, with lawmakers and community leaders framing it as a long-overdue institution to preserve and showcase the state’s African American heritage .A central point of contention has been the museum’s location. St. Augustine — widely recognized as the nation’s oldest city and a site deeply tied to both slavery and early Black history — emerged as the leading contender. Supporters argue the city’s historical significance makes it a natural home for the museum. However, competing interests and regional considerations have fueled debate, slowing consensus among lawmakers.
While the Senate-backed measure has consistently advanced, the lack of alignment in the House has underscored ongoing divisions about how and where the project should take shape.
The holdup in the Florida House appears to be less about opposition to the museum itself and more about a combination of procedural bottlenecks, unresolved structural issues, and lingering disagreements over how the project should be formalized and governed.
Despite the legislative setbacks, Republican Gov. Ron DeSantis has publicly voiced support for the museum. Speaking last month during the unveiling of a statue of abolitionist Frederick Douglass in St. Augustine, DeSantis said the project would move forward “one way or another,” signaling an intent to see the museum built regardless of legislative hurdles.
The anticipated museum has already cleared several hurdles. St. Johns County signed an agreement last year with Florida Memorial University to use the land that once housed its campus last year’s legislative session netted $1 million in funding for St. Johns County to work on planning and design for the museum. However, its anticipated that a million $3 million is needed.
Still, without statutory approval to finalize key components — including governance, funding mechanisms and site selection — the project remains largely conceptual.
With the House bill failing again, the timeline for the museum’s development is unclear. Lawmakers could revisit the proposal in the next legislative session, but any further delays risk pushing the project back several more years. Advocates warn that continued inaction could stall momentum for a museum many see as critical to telling a fuller, more accurate story of Florida’s past. For now, the effort remains paused — caught between political support at the top and legislative gridlock within the Capitol.
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