#NNPA BlackPress

Pfizer, Sickle Cell Advocates Address Disease During Black Press Week

NNPA NEWSWIRE — People with rare diseases, like sickle cell disease, have unique and complex challenges and the Pfizer partnership provides an opportunity for NNPA to inform and educate readers of Black-owned newspapers in more than 70 markets across the country on sickle cell disease, which NNPA President and CEO Dr. Benjamin F. Chavis, Jr., said is an often misunderstood disease that has a profound impact on the health and well-being of those affected.

Published

6 years ago

March 25, 2019

Oakland Post

By Stacy M. Brown, NNPA Newswire Correspondent
@StacyBrownMedia

National Sickle Cell Advocacy Day 2019 is a great time to focus on key legislative issues that are important to individuals and their families who are living with the blood cell disorder, including promoting stable funding for research, better healthcare access, expanded programs and increased education and awareness for the Sickle Cell Disease community and programs throughout the country.

Lori Luck, the global medical director for Pfizer Rare Disease, joined Beverley Frances-Gibson, the president and CEO of the SCD Association of America; and Angie Snyder, a professor at Georgia State University, to discuss the latest in Sickle Cell Disease advocacy during Black Press Week in Washington, D.C.

The discussion came ahead of National Sickle Cell Advocacy Day, which is actually held over two days on April 8 and April 9 at the Kellogg Conference Hotel at Gallaudet University in Washington.

The event features advocacy training and meetings with legislative champions and a collaboration of federal partners, as advocates attempt to raise awareness to the disease which affects about 100,000 Americans and occurs among nearly 1 out of every 365 black or African American births.

According to researchers, the illness occurs among about 1 out of every 16,300 Hispanic American births and about 1 in 13 black or African American babies are born with sickle cell trait, meaning that the individual has inherited the sickle cell gene from one of his or her parents.

“We’re educators and we’re not only educating internal clients but external as well,” said Luck, who noted that Pfizer has partnerships with the Centers for Disease Control and Prevention as well as other organizations.

The company also has a partnership with the National Newspaper Publishers Association (NNPA), a trade association of more than 200 African-American–owned community newspapers from around the United States.

The partnership is a collaboration to raise awareness of sickle cell disease, a lifelong and debilitating genetic disorder that affects red blood cells.

People with rare diseases, like sickle cell disease, have unique and complex challenges and the Pfizer partnership provides an opportunity for NNPA to inform and educate readers of Black-owned newspapers in more than 70 markets across the country on sickle cell disease, which NNPA President and CEO Dr. Benjamin F. Chavis, Jr., said is an often misunderstood disease that has a profound impact on the health and well-being of those affected.

“Together with Pfizer, we look forward to providing sickle cell disease education that can underscore the importance of improving quality of care in the community,” Chavis said.

Snyder, whose work at Georgia State University includes researching and advocating for the sickle cell disease community, said it’s important that everyone is educated.

“We have to continue to study on what works and doesn’t work for people,” she said.

Francis-Gibson said conversations must take place in and outside the home. “Sickle Cell Disease is personal for me because I have a family member who died from sickle cell disease when I was in high school,” Francis-Gibson said.

“We never discussed it and when I was offered my current position I knew it was my calling because if my own family isn’t discussing sickle cell disease, I knew that other families weren’t discussing it either,” she said.

In December, a bi-partisan bill aimed at fighting sickle disease was signed into law by President Donald Trump.

The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 was introduced by Sens. Cory Booker, D-N.J., and Tim Scott, R-S.C., in February 2018 and passed in the Senate in October.

The bill also reauthorizes a current sickle cell disease prevention and treatment program for nearly $5 million each year over the next five years.

“Even though sickle cell disease is the most common inherited blood disorder in our country, research and treatment lags behind that of other chronic illnesses,” Booker said in a statement.

“Our legislation will help find new ways to improve the lives of people suffering from sickle cell disease. It’s time we start treating sickle cell disease as a serious and debilitating illness and allocate adequate resources to monitoring, researching, and treating it,” he said.

Francis-Gibson said advocacy for funding the bill is still needed.

“It’s important everyone comes out during National Sickle Cell Advocacy Day and join me on Capitol Hill because when I’m speaking to the legislators, it’s much better when they look and see all of the people behind me,” she said.

Oakland Post

Posts by Oakland Post

Up Next

Gary Clark Jr. Live at the Beacon Theater

Don't Miss

Executive coach Marion Brooks gives secrets of the top 5% in corporate America

Oakland Post

Click to comment

#NNPA BlackPress

OP-ED: The Illusion of Allyship. White Women, Your Yard Signs Mean Nothing to Me

NNPA NEWSWIRE – “The blue bracelets are something White women are wearing so others can see that they didn’t vote for Trump,” says Liberal Lisa from Oklahoma on X. Chile, bye. These bracelets are hollow symbols, empty gestures that mean nothing to me. An accessory to claim distance from Trump’s legacy is superficial comfort, while the choice to not stand with us in the voting booth is far more profound.

Published

2 weeks ago

November 9, 2024

Oakland Post

Political yard signs can symbolize intentions and allegiance. But this year, they’ve also symbolized betrayal. During this general election, Black women were led to believe that more White women would stand with us. Exit polls, however, told a different story. Despite overwhelming displays of support, more White women still chose to vote for the convicted felon, reality TV star, and rapist. White women answered the call but left us hanging at the polls.

A Familiar Disappointment

I live in DeKalb County, Georgia, and the abundance of Harris-Walz yard signs could’ve fooled me. But I’ve seen this before, back when Stacey Abrams ran for governor. White women showed up, put up signs, attended rallies, knocked on doors, and phone-banked. Yet, when it came time to vote, they let us down—not once but twice. I’ve been here for over 15 years, and if there’s one thing I know, it’s that political signs are symbols without weight.

In every election, I’ve talked with White women. Most aren’t the primary earners in their families and vote along party lines, aligning with the preferences of their fathers and husbands. These conversations reveal a reluctance to break from tradition, even when their votes affect women and certainly when their votes impact the lives of people who look like me.

The Illusion of Solidarity—Symbols Are Not Enough

On social media, I’m seeing White women posting pictures of blue bracelets to “prove” they didn’t vote for Trump. “The blue bracelets are something White women are wearing so others can see that they didn’t vote for Trump,” says Liberal Lisa from Oklahoma on X. Chile, bye. These bracelets are hollow symbols, empty gestures that mean nothing to me. An accessory to claim distance from Trump’s legacy is superficial comfort, while the choice to not stand with us in the voting booth is far more profound.

I’ve seen Black Lives Matter signs and black squares posted on Instagram to “prove” support for Black people, but we now know that was a lie, too. Will those same people who claimed Black lives mattered now take down their Harris-Walz signs and show their true selves?

Navigating these truths is a daily struggle for me—professionally and socially. White women often misuse their privilege, supporting us only when it’s convenient. Seeing overqualified Black women sabotaged or abandoned by White women at critical moments is a constant emotional challenge. It’s exhausting to live with this reality, especially when solidarity seems like something they pick up and discard at will.

One clever campaign ad from Harris-Walz that spoke directly to White women. “Your Vote, Your Choice” emphasized that their vote was private—independent of their household situation. Another was from Olivia Howell Dreizen, the “Vote Without Fear” campaign, which empowered women to consider the greater impact of their choices. But it seems many still couldn’t choose the roadmap to freedom—even when it was handed to them.

A Call for Action Beyond Words

White women, I want to believe you care, but actions speak louder than yard signs, bracelets, or Instagram posts. Show up in our communities, advocate in your workplaces, and stand up to dismantle the structures that uphold white supremacy. Only through real action will we know where you stand.

If you choose not to act, we see you—and we know exactly where you stand. Good luck these next four years.

Disclaimer: The views and opinions expressed in this article do not necessarily reflect the official policy or position of BlackPressUSA.com or the National Newspaper Publishers Association.

Oakland Post

Posts by Oakland Post

#NNPA BlackPress

Supernova Parenting Conference Empowers Over 100 Parents with Resources for Neurodivergence and Mental Health

The inaugural Supernova Parenting Conference was co-hosted by Natasha Nelson, known as Supernova Momma, and Yolanda Walker, founder of Parenting Decolonized. It brought together over 100 parents, caregivers, and educators dedicated to fostering understanding and support for neurodivergent children and mental health challenges. The conference provided invaluable resources, expert insights, and a collaborative space for […]

Published

2 weeks ago

November 7, 2024

BlackPressUSA.com

The event featured a variety of workshops, panel discussions, and keynote speeches from leading experts in neurodiversity and mental health. Attendees left with practical tools and strategies to enhance their parenting journeys, emphasizing the importance of understanding and supporting the unique needs of neurodivergent children.

“While the conference was a tremendous success, we believe that our work doesn’t end here,” said Natasha Nelson. “It’s crucial to continue providing ongoing support and resources for parents as they navigate this important journey. We want to ensure families can access the tools they need long after the conference.”

To extend the momentum generated at the conference, Natasha and Yolanda are excited to announce the launch of the Supernova Parenting Community. This membership-based initiative aims to offer a safe and supportive environment for parents and caregivers to continue their growth as conscious parents.

Membership is available for as little as $5 a month via Patreon, making it accessible for all families seeking support.

“We know that parenting can be a challenging journey, especially when navigating neurodivergence and mental health issues,” Yolanda Walker added. “Our goal is to build a community where parents feel seen, heard, and supported. We hope you’ll join us in this vital work.”

For more information about the Supernova Parenting Community and to sign up for membership, please visit supernovaparenting.org