Tag Archives: Sickle Cell News

NFL players spotlight Sickle Cell Disease Association of America

The NFL’s My Cause My Cleats campaign features players showcasing important causes on their cleats each year during Week 13 games in early December.

Tevin Coleman’s Cleats

San Francisco 49ers running back Tevin Coleman and Arizona Cardinals linebacker Markus Golden will support the Sickle Cell Disease Association of America through the NFL’s My Cause My Cleats program by wearing custom-designed cleats with inspirational artwork and messages to raise awareness and engagement around sickle cell disease.

“We’re thrilled and grateful to Tevin and Markus for recognizing the Sickle Cell Disease Association of America on their cleats this year,” said Regina Hartfield, president and CEO of the Sickle Cell Disease Association of America. “The visibility and support mean so much to us and the thousands of families living with sickle cell disease across the country.”

Coleman is an eight-year veteran running back in the NFL. For him, supporting the Sickle Cell Disease Association of America means supporting his daughter.

“As the father of a child who lives with sickle cell disease, I know how important it is for people affected by sickle cell to receive the high-quality health care and support they need and deserve. I’m proud that my cleats this year will help support the Sickle Cell Disease Association of America and also recognize the strength of my daughter, Nazaneen, who inspires me every day,” Coleman said. “Together with my wife, Akilah, our hope is that by raising awareness and connecting people to this amazing organization, we will help more individuals and families battling this condition to live well and thrive.”

Off the field, Tevin and Akilah Coleman partner with Pfizer to advocate for sickle cell disease and share their family’s story at SickleCellSpeaks.com. Pfizer partners with the Sickle Cell Disease Association of America to advance education and awareness of sickle cell disease.

Coleman worked with footwear artist and designer Dan Gamache, known as “Mache,” to create cleats honoring those who inspire his commitment to help improve the lives of people with sickle cell. The cleats include the name of Coleman’s 5-year-old daughter, Nazaneen, and her favorite animal, a purple butterfly, alongside sickle cell imagery in the style of Hertz Nazaire, a renowned artist and sickle cell warrior. The cleats will also feature the Sickle Cell Disease Association of America’s logo and a unifying hashtag, #SickleCellMatters.

A Sickle Cell Disease Association of America celebrity ambassador, Golden grew up in St. Louis, graduated from the University of Missouri and was selected by the Arizona Cardinals in the 2015 NFL draft. He has featured the Sickle Cell Disease Association of America and sickle cell causes on his cleats in past years.

“Sickle cell disease is a condition that’s often forgotten, but it profoundly affects so many families across the country,” Golden said. “I lost my cousin Jonah at only 10 years old to the disease, and that’s why I’m so driven to bring attention to sickle cell and the Sickle Cell Disease Association of America on my cleats this year. I’m proud to once again partner with such an important organization to support people with sickle cell. I hope every step I take on the field is a step toward finding a cure for sickle cell.”

The NFL will auction Golden’s and Coleman’s cleats on the league’s website after the Week 13 games. Auction proceeds will support the Sickle Cell Disease Association of America.  

New Publications Emphasize Inequities in Pediatric SCD Care

This week, two new publications call attention to the barriers to care children with SCD face. Prioritizing Sickle Cell Disease, an article co-authored by SCDAA Chief Medical Officer Lewis Hsu for the American Academy of Pediatrics, is a call to action within the medical community to work together to maximize available screenings and treatments. The Centers for Disease Control and Prevention’s newly released Vital Signs publication, Preventing Sickle Cell Anemia Complications in Children, reports fewer than 50% of children 2-16 years old received the recommended screening for stroke in 2019. Both publications identify racism and discrimination as barriers to quality care and potentially lifesaving preventative measures for children with SCD.

Click here to read Prioritizing Sickle Cell Disease.

Click here to read Preventing Sickle Cell Anemia Complications in Children.  

SCDAA Joins the Newly Formed Sickle Cell Disease Partnership

Partnership Calls on Policymakers to Implement Proposals in 2020 Landmark Report 

Today, in recognition of World Sickle Cell Day on June 19th, the Sickle Cell Disease Association of America announced it has joined the newly formed Sickle Cell Disease Partnership. The Partnership is comprised of 15 organizations representing a diverse cross-section of patient advocates, health care providers, health insurers, biopharmaceutical companies and others committed to improving the lives and outcomes of individuals living with Sickle Cell Disease.

“For too long, our nation has turned a blind eye to the devastating toll of Sickle Cell Disease on the lives of 100,000-plus Americans and their families. Today, one in 13 African Americans carry the trait for Sickle Cell, meaning their children are at risk for having the disease,” said Dr. Brett Giroir, Senior Advisor, Sickle Cell Disease Partnership. “The majority of people living with Sickle Cell Disease lack basic access to care, while our health care infrastructure and investments in research have failed to keep pace with the desperate need for treatment. It’s time for our nation’s leaders to prioritize individuals with Sickle Cell Disease and implement the recommendations of The National Academies’ 2020 Strategic Plan and Blueprint for Action.”

Coalition members, including SCDAA, are calling on Congress and the Administration to act with urgency to adopt The National Academies’ policy recommendations outlined in its landmark 2020 report, “Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.”

About the Sickle Cell Disease Partnership

The Sickle Cell Disease Partnership is a multi-sector collaboration of health care stakeholders committed to advancing actionable federal health care policies that will improve the lives of patients living with Sickle Cell Disease. The Partnership’s main objective is to work collaboratively across the Sickle Cell Disease community to translate the recommendations of the National Academies’ landmark 2020 report into legislative and administrative actions in Congress and the Executive Branch. The Sickle Cell Disease Partnership is convened and managed by Leavitt Partners, an HMA company.

About the Sickle Cell Disease Association of America (SCDAA)

SCDAA advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 50 member organizations support sickle cell research, public and professional health education and patient and community services.

About Sickle Cell Disease

Sickle Cell Disease is a rare, genetic blood disorder that primarily affects Black individuals. Sickle Cell Disease is inherited when a child receives two sickle cell genes—one from each parent. A person with the disease is born with it; people cannot catch it from being around a person who has it. Sickle Cell Disease affects an estimated 100,000 Americans and can cause pain and other serious problems such infection, acute chest syndrome, lung problems, severe pain, and stroke.

Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has Sickle Cell Disease, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle.” The sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow.

This can cause pain and other serious problems such as infection, acute chest syndrome, lung problems and stroke. Learn more about Sickle Cell Disease here.

Contact Us

To learn more about the Sickle Cell Disease Partnership, please visit www.sicklecellpartnership.org. Members of the media can reach our press office at: communications@sicklecelldisease.org.  

SCDAA recognized for leadership

The Sickle Cell Disease Association of America received the Abbey S. Meyers Leadership Award from the National Organization for Rare Disorders. The annual award honors organizations that serve members with strong leadership in advocacy and education.

“We’re grateful for the recognition at the Sickle Cell Disease Association of America,” said Regina Hartfield, president and CEO of the association. “It wouldn’t have been possible without the dedication, hard work and unwavering commitment of the sickle cell community, including our sickle cell warriors, caregivers, staff from the national office and partners. They deserve all the praise.

The Sickle Cell Disease Association of America will receive the award during a live ceremony at the Rock & Roll Hall of Fame in Cleveland, Ohio, on June 26, 2022, during the National Organization for Rare Disorders’ Living Rare, Living Stronger Patient and Family Forum.

The National Organization for Rare Disorders is an independent advocacy organization representing all patients and families affected by rare diseases in the United States. Together with over 300 disease-specific member organizations, more than 17,000 advocates across all 50 states and national and global partners, the organization works to improve the lives of those impacted by rare diseases.

   

SCDAA partners with Phi Beta Sigma Fraternity

The Sickle Cell Disease Association of America (SCDAA) partnered with Phi Beta Sigma Fraternity Inc. to increase awareness about sickle cell disease and raise funds to support education about the negative effects of sickle cell disease on the physical, economic and social well-being of individuals with the condition.

“SCDAA is excited to again partner with the Phi Beta Sigma Fraternity, and we are honored to have been chosen as a recipient of their donations,” said Regina Hartfield, president and CEO of SCDAA. “Phi Beta Sigma is deeply committed to serving and supporting the community, as is SCDAA. Their support will go far to benefit those living with sickle cell disease.”

The partnership will support the SCDAA and sickle cell community through raising funds, mobilizing blood and bone marrow drives and collaborating to educate the community about sickle cell disease and sickle cell trait. Phi Beta Sigma Fraternity will encourage chapters to collaborate with their local American Red Cross to host blood drives and the Be The Match Registry to host bone marrow drives. Chapters will conduct screenings to help adolescents and adults detect sickle cell and organize fundraisers for sickle cell research, education and children’s services.

“SCDAA is proud to continue its partnership with Phi Beta Sigma in raising awareness about sickle cell disease,” said Thomas L. Johnson, chair of the SCDAA board of directors. “Its dedication to the mission of SCDAA is exemplary of providing support and assistance for those in need.”

Phi Beta Sigma Fraternity was founded at Howard University in Washington, D.C., in 1914 to exemplify the ideals of brotherhood scholarship and deliver services to the general community. The fraternity’s motto is “Culture for Service and Service for Humanity.”

“This disease effects one out of every 365 Black or African-American births and one out of every 16,300 Hispanic-American births,” said Chris Rey, president of the fraternity. “Phi Beta Sigma is dedicated to doing all we can to change these grim numbers. We are excited to continue our partnership with SCDAA to continue to fight for a cure.”  

HCPLive® Announces Partnership With Sickle Cell Disease Association of America (SCDAA)

HCPLive® Announces Partnership With Sickle Cell Disease Association of America (SCDAA)
SCDAA’s mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to raise awareness and maximize patient quality of life.
(CRANBURY, N.J. – September 7, 2021) – HCPLive®, a multimedia platform dedicated to providing physicians with up-to-date specialty and disease-specific information to help them offer the best patient care, is thrilled to announce the addition of the Sickle Cell Disease Association of America (SCDAA) to its Strategic Alliance Partnership (SAP) program.
“The addition of the Sickle Cell Disease Association of America to our SAP program will allow us to further collaborate on initiatives that will positively impact the industry,” said Mike Hennessy Jr., president and CEO of MJH Life Sciences™, parent company of HCPLive®. “With a mission of advocating to raise awareness and maximize patient quality of life, SCDAA’s goals align directly with ours as a publication.”
As a leader in promoting and advancing initiatives focused on people affected by sickle cell conditions worldwide, SCDAA and its affiliate organizations pursue national health care objectives while demonstrating how community-based organizations can work. After more than 45 years, SCDAA continues to recognize how critical it is to raise awareness and gain support for both the social and public health aspects of sickle cell disease.
SCDAA’s national efforts focus on six broad areas:

  • Research
  • Public Health Education
  • Professional Health Education
  • Patient Services
  • Community Services
  • Support to Global Organizations and Practitioners

The SAP program builds a community of advocacy groups, medical associations, and medical institutions to foster collaboration and an open exchange of information among trusted peers, for the ultimate benefit of patients and their families. As part of this joint effort, HCPLive® will work with the partners to share exclusive information and improve patient outcomes. 
For the full list of HCPLive® SAP partners, click here. 
About HCPLive®  
HCPLive® is a comprehensive clinical news and information portal that provides physicians and other health care professionals with up-to-date specialty- and disease-specific resources to help them deliver better care to patients. Readers have access to breaking news, video interviews with physician experts, in-depth conference coverage, finance and practice management updates, insights and analysis from physician contributors and other resources. HCPLive® is a brand of MJH Life Sciences™, the largest privately held, independent, full-service medical media company in North America, dedicated to delivering trusted health care news across multiple channels.  
HCPLive®Media Contact  
Alyssa Scarpaci, 609-716-7777 
ascarpaci@mjhlifesciences.com   

Sickle Cell Disease Association of America announces new teen ambassador

Sickle Cell Disease Association of America (SCDAA) named 14-year-old Ayana Lee Johnson the 2021-2023 SCDAA National Teen Ambassador. She was selected through a nationwide competition formerly known as the Poster Child Contest that started in 1976. Her reign will begin with an official coronation during SCDAA’s Annual National Convention Oct. 12-16.

In her role as SCDAA National Teen Ambassador, Johnson will make public appearances and act as an emissary, assisting with education campaigns and securing public and private sector support for the SCDAA mission. She will serve as a goodwill ambassador for SCDAA and be a positive role model for teens and other individuals living with sickle cell disease.

“SCDAA is thrilled with the selection of Ayana as our new Teen Ambassador,” said SCDAA President and CEO Beverley Francis-Gibson. “Her determination to fight for other SCD warriors and raise awareness of what it is like to live with sickle cell disease to anyone who will listen, along with her sparkling personality, are just a few reasons why she was chosen. She is resilient and determined not to be limited or defined by SCD.”

Johnson is an honors student at Nansemond River High School in Suffolk, Virginia, and she attends the Governor’s School of the Arts. She is a competitive dancer with many national titles and has been accepted into summer intensives with both the Dance Theatre of Harlem and the Joffrey Ballet School. Johnson also plays violin and competes in pageants. She currently holds the title of Miss America’s Outstanding Teen Piedmont Region 2020-2021.

“Sickle cell disease does not define me,” said Johnson. “I am a warrior living my best life.”

Johnson was featured in Suffolk News Herald’s 20 Under 21, and among her many accomplishments, she is the recipient of the St. Peter Claver Service and Sickle Cell Activism Award; the Making the Difference – Sickle Cell Champion Warrior Award and Scholarship; and the 2019 Excellence Girls Club Pioneer Award. In 2020-2021, she completed 200 volunteer hours, some of them working as an American Red Cross Blood Drive escort and greeter.  

The Kidney Cancer Association and SCDAA launch KNOW & TELL

New campaign to raise awareness about connection between sickle cell trait and deadly form of kidney cancer.

The Kidney Cancer Association (KCA) and the Sickle Cell Disease Association of America, Inc. (SCDAA) are partnering to launch the “KNOW & TELL” initiative today to raise awareness about sickle cell trait (SCT) and its link to a rare, aggressive type of kidney cancer called renal medullary carcinoma (RMC).
The year-long initiative seeks to promote the early identification of RMC by encouraging people to know their SCT status and inform their family and health care providers about the connection between SCT and RMC. Being aware of both SCT status and the rare RMC symptoms could help in identifying RMC early, obtaining appropriate care and increasing positive outcomes.
RMC typically affects young Black men under age 30 and about half of those diagnosed do not survive beyond 13 months.1 RMC makes up less than 1% of all kidney cancers but is almost exclusively found in people who carry SCT, a usually benign condition that can occasionally cause symptoms similar to sickle cell anemia.
“One of my key platforms is bringing greater awareness to rare types of kidney cancer and supporting research into treatments for underrepresented populations,” said the KCA’s Medical Director Sallie McAdoo, MS, CGC. “We’re proud to partner with SCDAA to bring greater awareness to RMC and its association with SCT through KNOW & TELL in the hope of helping those who are at risk identify it sooner, increase research into the condition, and improve outcomes.”
The SCDAA is an advocacy organization focused on education and advancing research for sickle cell conditions.
“We are excited to be partnering on this vital strategic initiative to increase awareness about SCT and one of the many possible complications tied to the trait,” said Beverley Francis-Gibson, president and CEO of the Sickle Cell Disease Association of America. “This campaign shows that knowledge is power and can have a big impact on care.”
Newborns are routinely screened for SCT however, those who carry the trait may not show symptoms and are therefore often not told they have it. Low awareness about SCT status and the lack of understanding about the link between SCT and RMC contribute to late-stage RMC diagnoses and shortened life expectancy.
“The RMC community may be smaller but is no less important than that of other cancer types and they are passionate about advocating for greater awareness about the disease and access to clinical trials for the opportunity to better understand and treat this rare cancer,” said Gretchen E. Vaughan, KCA’s president and CEO. “Partnering with the SCDAA for this initiative is the first step toward bridging the knowledge gap about the link between RMC and SCT.”
KNOW & TELL launches on June 18, following World Kidney Cancer Day on June 17, and in advance of World Sickle Cell Day on June 19.  Learn more at www.kidneycancer.org/know-and-tell.

1. National Association for Rare Disorders

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About the Kidney Cancer Association
The Kidney Cancer Association is a global community dedicated to serving and empowering patients and caregivers, and leading change through advocacy, research, and education in order to be the universal leader in finding the cure for kidney cancer. Founded in 1990 by Eugene P. Schonfeld and a small group of patients and doctors in Chicago, Illinois, the KCA has grown into an international non-profit organization based in Houston, Texas. The KCA promotes scientific advances through two annual research symposiums and a robust grant program, participates in legislative advocacy, and seeks to be a source of education and resources for patients, caregivers, and anyone impacted by kidney cancer.
Contact: Radha Chitale, Director of Communications. 847.332.1051 ext. 113 | rchitale@kidneycancer.org
About the Sickle Cell Disease Association of America
Sickle Cell Disease Association of America advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 50 member organizations support sickle cell research, public and professional health education and patient and community services. www.sicklecelldisease.org  

GBT and SCDAA Kick Off “Lift Every Voice to Shine the Light on Sickle Cell”

May 04, 2021 at 8:00 AM EDT
SOUTH SAN FRANCISCO, Calif. and HANOVER, Md., May 04, 2021 (GLOBE NEWSWIRE) —In recognition of World Sickle Cell Day, which falls on June 19, 2021,Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT) and the Sickle Cell Disease Association of America, Inc. (SCDAA) today launched “Lift Every Voice to Shine the Light on Sickle Cell” – a contest that will feature original spoken word pieces to raise awareness of sickle cell disease (SCD). The contest, which aims to elevate the voices and experiences of people living with SCD and their caregivers, is presented by Sickle Cell Speaks, GBT’s SCD education campaign that highlights authentic stories of those living with SCD to dispel misconceptions about the disease.
“People with sickle cell disease possess an incredibly rich and diverse array of creative abilities, often used to express the physical and emotional burden of living with this complex and devastating disease,” said Beverley Francis-Gibson, M.A., president and CEO of the SCDAA. “Celebrating these voices is critical as we work to overcome the legacy of stigma and misinformation that have a direct impact on health outcomes. We are proud to partner with GBT to shine the light on the challenges that SCD warriors face with strength and resilience.”
Spoken word poetry is an art form rooted in traditions of storytelling to convey compelling messages and personal experiences. People living with SCD and their caregivers are invited to sign up to submit videos of themselves performing original spoken word pieces about their experience with SCD. To learn more about the contest details and how to submit a video, please email patientevents@sicklecellspeaks.info or visit www.facebook.com/SickleCellSpeaks. Participants must sign up by May 24, 2021, and be U.S. residents. For each eligible submission received, GBT will donate $100 to the SCDAA, up to a total donation of$5,000. The contest winner will be featured in a GBT event at the SCDAA Annual Convention in October 2021. “Shine the Light on Sickle Cell” is a collaboration between SiNERGe and SCDAA.
“GBT is proud to partner with SCDAA to recognize the many inspiring voices within the sickle cell community who have rallied for progress in the face of tremendous health and societal challenges over the last year,” said Jung E. Choi, chief business and strategy officer, and head of patient advocacy and government affairs at GBT. “People with SCD suffer from a terrible, life-threatening disease that is made worse by being subjected to racial bias. We reiterate our commitment to shining a brighter light on the inequities these patients encounter and will continue working with all our partners to ensure access to the high-quality care patients deserve.”
Performances by the spoken word contest winner and finalists will be featured in a virtual event on Friday, June 18, 2021, at 4:00 p.m. PT and Saturday, June 19, 2021, at 12:00 p.m. PT on the Sickle Cell Speaks Facebook and Instagram pages. The event will be hosted and feature performances by three SCD advocates who are passionate about using spoken word to educate and inspire change:

  • Charly Richard, musician and writer
  • DeMitrious Wyant, musician and entrepreneur
  • Candis St. John, nurse and poet

About Sickle Cell Disease
Sickle cell disease (SCD) affects an estimated 100,000 people in the United States,1 an estimated 52,000 people inEurope,2 and millions of people throughout the world, particularly among those whose ancestors are from sub-Saharan Africa.1 It also affects people of Hispanic, South Asian, Southern European, and Middle Eastern ancestry.1 SCD is a lifelong inherited blood disorder that impacts hemoglobin, a protein carried by red blood cells that delivers oxygen to tissues and organs throughout the body.3 Due to a genetic mutation, people with SCD form abnormal hemoglobin known as sickle hemoglobin. Through a process called hemoglobin polymerization, red blood cells become sickled – deoxygenated, crescent-shaped, and rigid.3-5 The sickling process causes hemolytic anemia (low hemoglobin due to red blood cell destruction) and blockages in capillaries and small blood vessels, which impede the flow of blood and oxygen throughout the body. The diminished oxygen delivery to tissues and organs can lead to life-threatening complications, including stroke and irreversible organ damage.4-7
About SCDAA
Sickle Cell Disease Association of America(SCDAA) advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 50 member organizations support sickle cell research, public and professional health education and patient and community services. Visitwww.sicklecelldisease.org.
About Global Blood Therapeutics
Global Blood Therapeutics(GBT) is a biopharmaceutical company dedicated to the discovery, development, and delivery of life-changing treatments that provide hope to underserved patient communities. Founded in 2011, GBT is delivering on its goal to transform the treatment and care of sickle cell disease (SCD), a lifelong, devastating inherited blood disorder. The company has introduced Oxbryta®(voxelotor), the first FDA-approved treatment that directly inhibits sickle hemoglobin polymerization, the root cause of red blood cell sickling in SCD. GBT is also advancing its pipeline program in SCD with inclacumab, a P-selectin inhibitor in development to address pain crises associated with the disease, and GBT021601 (GBT601), the company’s next-generation hemoglobin S polymerization inhibitor. In addition, GBT’s drug discovery teams are working on new targets to develop the next wave of treatments for SCD. To learn more, please visit www.gbt.com and follow the company on Twitter @GBT_news.
References

  1. Centers for Disease Control and Prevention website. Sickle Cell Disease (SCD). https://www.cdc.gov/ncbddd/sicklecell/data.html. Accessed June 3, 2019.
  2. European Medicines Agency.https://www.ema.europa.eu/en/medicines/human/orphan-designations/eu3182125. Accessed June 12, 2020.
  3. National Heart, Lung, and Blood Institute website. Sickle Cell Disease. https://www.nhlbi.nih.gov/health-topics/sickle-cell-disease. Accessed August 5, 2019.
  4. Rees DC, et al. Lancet. 2010;376(9757):2018-2031.
  5. Kato GJ, et al. Nat Rev Dis Primers. 2018;4:18010.
  6. Kato GJ, et al. J Clin Invest. 2017;127(3):750-760.
  7. Caboot JB, et al. Paediatr Respir Rev. 2014;15(1):17-23.

GBT Contact Information:
Steven Immergut
650-410-3258
simmergut@gbt.com
SCDAA Contact Information:
Emma Day
eday@sicklecelldisease.org
Kyri Jacobs
kjacobs@sicklecelldisease.org

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