By Lauren Poteat, NNPA Newswire Washington Correspondent
It’s been more than 100 years since sickle cell disease was first discovered in America.
Today, the rare hereditary blood disorder continues to affect millions of people throughout the world.
Sickle cell disease – or SCD – affects approximately 100,000 Americans and occurs among about 1 out of every 365 African-American births, according to medical experts.
Nearly 1 in 13 African American babies are born with the sickle cell trait, which medical experts said means that an individual has inherited the sickle cell gene from one of his or her parents.
During its annual convention, the National Newspaper Publishers Association (NNPA), a trade organization that represents African American-owned newspapers and media companies throughout the U.S., partnered with Pfizer Rare Disease (Pfizer) to host a forum on this rare disease.
“I was diagnosed with sickle cell disease at the age of 1,” said Marie Ojiambo, a consultant for Pfizer, during the forum moderated by NNPA President and CEO, Dr. Benjamin F. Chavis, Jr.
“And always wanted to be a support system and advocate for research, for other young women, going through the same thing,” Ojiambo said.
“Because of this, I always felt like it was important for me to not only introduce myself by my profession, but also as a sickle cell warrior,” said the Kenyan native.
“When I competed in the Miss Africa USA pageant back in 2014, I made sure that my pageant platform, represented the same personal goals I had for myself and advocated for, sickle cell disease awareness,” she said.
Dr. Chavis emphasized, “The NNPA is grateful to Pfizer for introducing Marie Ojiambo to the Black Press of America. Ms. Ojiambo is an excellent role model for millennials, and in particular for young African and African American women, who are interested in STEM (science, technology, engineering, and math) fields of study. Marie Ojiambo’s outstanding success as a research scientist is truly inspiring as she did not allow the challenges of Sickle Cell Disease to prevent her from achieving her professional career goals.”
According to the National Center for Biotechnology Information, the sickle cell disease trait is most commonly found in places like Africa, India and Southeast Asia.
However, it is not exclusive to one race.
Also, as the Hemoglobin disorders follow the malaria belt around the globe, those who have the trait are relatively protected from malaria.
Although most who carry the sickle cell trait remain healthy, medical statistics show that if two healthy people who carry the trait join to conceive a child, there’s still a one in four chance with every pregnancy that they would have child with active SCD.
Ojiambo, who graduated from St. John’s University’s College of Pharmacy and Health Sciences in New York and who specializes in pre-clinical Pharmaceutical Research, is also the founder of the Sickle Strong Initiative—a Kenyan-based NGO whose mandate is to raise awareness around sickle cell disease and advocate for better health care opportunities for patients suffering from the disease in Kenya.
While she champions research and viable medications and solutions, Ojiambo also emphasized the importance of being regularly tested.
“Both of my parents were carriers of the sickle cell trait and so when they came together, I received the disorder,” Ojiambo said.
“It is so important to know your status and to get tested regularly,” Ojiambo continued.
“Take part in clinical trials and work to make sure you have access to primary care physicians and a good hematologist.”
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.
*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.
By Amanda Scurlock
If Las Vegas had Aces, the Los Angeles Sparks had a royal flush on Thursday in their 76-68 win over the Las Vegas Aces. The odds were against the Sparks as the Aces were searching for their 15th win of the season, which would have put them in first place in the WNBA.
“They’re a contender right now,” said Sparks center Nneka Ogwumike. “We would really like to be able to win the series because they’re the team we play four times this year.”
Some might have betted against the Sparks due to injuries, with Chiney Ogwumike and Alana Beard out, but their hand stayed hot throughout the game. Sparks star Candace Parker, guard Alexis Jones and forward Maria Vadeeva returned to the lineup.
Nneka led the Sparks with 19 points and 11 rebounds. Guard Chelsea Gray led the Sparks with 10 assists to complement 16 points. In her return, Parker made a showing with 16 points, seven rebounds, three steals, and four blocks.
Aces guard Kayla McBride had 19 points and forward Dearica Hamby made 11 rebounds with her 11 points. Las Vegas was without starting guard A’ja Wilson, who is out with an ankle injury.
The Sparks jumped to an 11-4 lead to begin the game, by Parker who had six points by the first timeout. Aces center Liz Cambage picked up two quick fouls and was soon subbed out the game.
“We know she was a big offensive part of her playing,” center Kalani Brown said about Cambage. “Her getting in foul trouble that takes away a lot so our girls can get to the paint.”
When the Aces’ shots were not falling, guard Tamera Young made plays to keep the Aces in the game. Las Vegas had a nine-point deficit at the end of the first.
Brown hit a jumper, pegging the Sparks score at 26. Then Los Angeles hit a four-minute lull, allowing Las Vegas to get within two points. Guard Kayla McBride would give the Aces the lead with a free throw; she continued to best the Sparks defense, scoring 11 points in the second quarter alone.
“Every now and then people get in foul trouble,” said Aces head coach Bill Laimbeer. “We have other players who are able to come in and pick it up. We got behind in the first quarter, but our bench did a good job of coming to get the game back and in their control for a tied half time.”
The Aces frontcourt managed the offense with a 10-3 run after the half. Ogwumike found shots around the Las Aves defense. Brown tied the game at 56 with a free throw and the Sparks began taking authority of the game late minutes of the third quarter. Guard Sydney Wiese tossed a no-look pass to Vadeeva, helping the Sparks remain in the lead.
“Sydney has been making big plays in practice,” Parker said. “I’ve watched her over the last three years develop.”
The Aces still competed in the fourth quarter; guard Kelsey Plum brought Las Vegas within one point. Cambage and McBride would also bring the game close, but Jones, Parker and Gray made shots to sustain the lead. Las Vegas only scored eight points in the final minutes of regulation.
“We missed a few chippy shots, layups,” Young said. “We wasn’t aggressive, I felt we let then get kind of comfortable and had lapses on communication.”
This article originally appeared in The Los Angeles Sentinel.
By Nsenga K. Burton, Ph.D., NNPA Newswire Culture and Entertainment Editor
It is summertime and many people are “bingeing” or “catching up” on their favorite television shows they haven’t had time to watch when they actually premiered or aired. While there are the usual suspects on HBO, Showtime, Bravo, Netflix and Starz, viewers should consider binge watching Stories from the Stage, the WORLD Channel original series that features ordinary people telling extraordinary stories, which returned with a national 24-hour binge-a-thon of episodes in June. The public television series features masterful storytellers from every walk of life, highlighting our differences and shared sense of humanity.
The latest season of Stories from the Stage includes the premiere of Rocky Top Remembers, an episode featuring stories about Morris Irby, the first black baseball player at Tennessee Tech University who learns the cost of being a trailblazer. “Rocky Top” refers to a place in Tennessee that is rocky and tough to plant, yet is fertile ground for great storytelling. Storytellers Harrison Young and Sandy Lewis are also featured on this episode, weaving tells of pecking orders in family and following in Dad’s footsteps, which isn’t always about the workplace or football field.
Viewers can also check out the episode, Game On!, featuring former Olympian and current USA Adaptive Water Ski Team member Nick Fairall discussing the leap that forever altered his Olympic dreams and his life. Each show is hosted by award-winning humorists and storytellers Theresa Okokon and Wes Hazard.
With more than 40 episodes, the Stories from the Stage gives viewers a chance to catch up on the series dedicated to bringing real stories — whether humorous or poignant, commonplace or astonishing — to American homes. Each 30-minute episode spotlights a trio of raconteurs — some experienced, some novices — sharing short anecdotes related to the episode’s unifying theme. Love, loss, family, food, immigration and celebrations are among the topics explored in episodes including “Lost & Found,” “Welcome to the Neighborhood,” “It’s All Relative” and “Holidays: The Good, The Bad.” Although each story is unique, audiences everywhere are able to connect and relate with storytellers from a mosaic of backgrounds, ages, cultures and abilities.
Stories from the Stage is a collaboration of WORLD Channel, WGBH Events and Massmouth, showcasing the communal art form of storytelling. The series reflects WORLD Channel’s commitment to bringing fresh and compelling voices to public media audiences on all platforms, while reflecting the diversity of modern America and the global community.
“Personal stories rich in human experience and emotion can create understanding, empathy and appreciation for people very different from us,” said Liz Cheng, General Manager for WORLD Channel and co-executive producer of the series. “With Stories from the Stage we hope to prove how much we all have in common and inspire community dialogue about our differences.” Stories from the Stage is co-executive-produced by Cheng and Patricia Alvarado Núñez.
Stories from the Stage episodes, original digital content, and more can be experienced on social media platforms such as Facebook, Twitter and Instagram and on the WORLD Channel website. Follow the hashtag #StoriesfromtheStage to hear every word.
This post was written by Nsenga K Burton, Ph.D., founder & editor-in-chief of The Burton Wire. An expert in intersectionality and media industries, Dr. Burton is also a professor of film and television at Emory University and co-editor of the book, Black Women’s Mental Health: Balancing Strength and Vulnerability. She is Entertainment and Culture Editor for NNPA. Follow her on Twitter @Ntellectual or @TheBurtonWire.
By Nsenga K. Burton, Ph.D., NNPA Newswire Culture and Entertainment Editor
Alice Walker, one of the premiere writers of the 20th Century, was honored in July by her hometown of Eatonton, GA for her 75th Birthday (Alice Walker 75). Hundreds of people flocked from all over the country to Walker’s birthplace to celebrate the birthday of the Pulitzer Prize winning author.
The activist, who was born February 9, 1944 in Eatonton left in 1961 to attend Spelman College, eventually enrolling at Sarah Lawrence College due to controversy surrounding her political activism at Spelman.
Walker’s legacy of activism and storytelling was on full display at the event, which was held at the Georgia Writers Museum and included a day of activities and events to honor Walker’s life and achievements. The event was co-chaired by award-winning author Valerie Boyd, editor of Gathering Blossoms Under Fire: The Journals of Alice Walker, which will be released in 2020 and Lou Benjamin, founder of Eatonton’s Briar Patch Arts Council.
Walker, who lived just outside of town, acknowledged this was the first time she had been to Eatonton and was unaware the Plaza Arts Center existed, which is where many of the festivities were held.
The day kicked off with a screening and discussion of the American Masters Documentary, Alice Walker: Beauty in Truth followed by a discussion with the filmmaker Pratibha Parmar and scholar Salamisha Tillet at The Plaza Arts Center.
Celebrants were able to take bus tours of the area and see Walker’s birthplace while fellow authors and poets and friends paid tribute to the game changer, who was clearly touched by the praise, humbly thanking the audience throughout the day of events.
An American Marriage novelist Tayari Jones read from the novel Meridian, poet Daniel Black read Walker’s short story “Flowers,” and poet Kamilah Aisha Moon read Walker’s poem, “How Poems are Made.” Journalist and author Evelyn C. White offered remembrances of friendship and activism and classically trained Gospel violinist Melanie R. Hill performed a medley of songs honoring the legend.
Perhaps the most poignant part of the program was when Walker’s daughter Rebecca, read several pieces including “Now That Book Is Finished,” a poem Walker wrote about Rebecca when she was a child. Rebecca’s son Tenzin, 14, performed an original song he composed entitled, “Sun and Steam,” which he played beautifully on the piano. Rebecca Walker’s words, expressions of love and gratitude to her mother and Tenzin’s performance were symbolic of the reconciliation between Walker and her daughter who had been estranged during a difficult period. Walker’s former husband Melvyn R. Levanthal was also in attendance.
The special birthday celebration ended with Walker taking the stage of The Plaza Arts Center for a candid conversation with Boyd, author of the award-winning biography Wrapped in Rainbows: The Life of Zora Neale Hurston. Walker and Boyd’s tête-à-tête ended with an invitation for all attendees to take the stage and dance with the celebrated author to two of her favorite songs, “Rock Steady,” by Aretha Franklin and “As” by Stevie Wonder, concluding a lovely day of celebration of one of the 20th Century’s greatest writers.
This article was written by Nsenga K Burton, Ph.D., founder & editor-in-chief of The Burton Wire. An expert in intersectionality and media industries, Dr. Burton is also a professor of film and television at Emory University and co-editor of the book, Black Women’s Mental Health: Balancing Strength and Vulnerability. Follow her on Twitter @Ntellectual or @TheBurtonWire.
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By Rep. Edolphus Towns
In my three decades representing parts of New York City in the House of Representatives, expanding economic opportunities for underserved communities was a top priority. That’s why, after I retired from public service, I joined the Board of World Business Lenders, an alternative business lender that provides desperately needed financing for businesses who want to grow or expand, leading to so many ancillary benefits to their local communities.
Unfortunately, not all alternative business lenders are created equal. In an industry that is not regulated, many of them are engaged in predatory practices, preying on the very customers they are committed to serving. Unlike World Business Lenders, which has voluntarily self-regulated by implementing a “best practices” lending program committed to offering fair and transparent loan terms to its borrowers, other alternative business lenders engage in opaque and occasionally destructive behavior that can lead to bankruptcy or worse for their own customers.
A critical tool for these predatory lenders has been the use of our state’s court system to seize the assets of small businesses whether located in New York or in any other state by employing legal instruments called “confessions of judgement.” These lenders have been requiring their small business borrowers, as a condition of receiving any short-term loans from them, to sign confessions of judgement that waive borrowers’ legal rights in any dispute with the lenders. Small business borrowers in other states have no right of notice if their assets are seized in New York under confessions of judgement and may not even realize if a New York judgement has been entered against them until their banks have seized their assets.
Alternative business lenders should make every loan transparent for their borrowers by clearly disclosing repayment terms, including interest rates, prepayment charges and by outlining clear payment schedules. Borrowers must be made aware of all fees and costs associated with their loans. Brokers and employees of alternative business lenders should be subject to background checks and continuing education requirements. Importantly, alternative business lenders should be required to offer each borrower terms not worse than the most favorable loan product for which he or she qualifies.
Alternative business lenders have nothing to fear from additional regulation. World Business Lenders is a successful company that profits even as we voluntarily abide by these terms, which protect customers. Unfortunately, in the political environment in Washington, it is unlikely that Congress will act to prevent predatory lenders from driving small business owners into bankruptcy. In the absence of leadership in Washington, it is time for Albany to act.
Rep. Edolphus Towns is a board member of World Business Lenders. He represented the 10th and 11th congressional districts in New York from 1983-2013.