Category Archives: Uncategorized

SCDAA Celebrate Black History Month: Prodigy

Our final #BlackHistoryMonth highlight is dedicated to rapper and sickle cell warrior Albert “Prodigy” Johnson, one-half of the iconic 90’s rap duo Mobb Deep. Prodigy was born in the 1970s to a family of musicians and was diagnosed with sickle cell SS at three months old. He grew up in Queens, New York City, and formed Mobb Deep with his partner Kejuan “Havoc” Muchita while attending the High School of Art and Design in Manhattan. They released their breakthrough album “The Infamous” in 1995, which is widely recognized as a hip-hop classic.
 
Mobb Deep’s street-smart rap style and emotionally charged lyrics are credited with the renaissance of the East Coast hip-hop scene. Mariah Carey, Jordan Knight, Kanye West and Jay Z have all sampled tracks from the group.
 
Prodigy made music with Mobb Deep and on a solo basis until the mid-2010s. He lost his battle to sickle cell in 2017, but his music lives on. Hear what he had to say about living with sickle cell in this 2011 interview.

 

SCDAA Celebrates Black History Month: Paul Williams

Meet Paul Williams, one of the founding members of the legendary Motown group The Temptations. Williams began singing as a kid with Eddie Kendricks in their church choir in Birmingham, Alabama. The two pursued music careers as members of various groups, eventually moving to Detroit to join Otis Williams, Melvin Franklin and Elbridge Bryant as The Temptations.

With Williams on board, the group released many hits, including “My Girl.” Williams was considered the best dancer in the group and choreographed many of their moves. He also served as the original choreographer for The Supremes. His battle as a sickle cell warrior was hidden from the public, and his health issues eventually caused him to leave the group. Williams’ indelible impact helped cement The Temptations’ place in history as one of the greatest vocal groups in modern times and trailblazers in the evolution of R&B and soul music.

 

SCDAA Celebrates Black History Month: Billy Garrett, Jr.

Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from following your dreams. This month, we’ll share the inspirational stories of household names and notable figures who didn’t let sickle cell hold them back. 

Meet Billy Garrett Jr., the first known person with sickle cell disease to play in the NBA. Billy grew up in Chicago, playing competitive basketball despite words of caution from his doctors. To keep playing, Garrett learned to balance hydration, rest and exertion through a process of trial and error that would occasionally lead to crises. His passion and dedication carried him through these obstacles and onto the court as a member of the DePaul Blue Demons, the New York Knicks and the Lakeland Magic. Off the court, we’re honored to have him on our team as one of our celebrity ambassadors. Hear his story and how he learned to play despite the pain.

 

SCDAA Celebrates Black History Month: Miles Davis

Happy Black History Month! Sickle cell can be painful and hard to manage, but it doesn’t need to stop you from following your dreams. This month, we’ll share the inspirational stories of household names and notable figures who didn’t let sickle cell hold them back. 

We kick off our celebration recognizing world-renowned jazz artist Miles Davis. He struggled with health issues – arthritis, hip-joint problems and pneumonia – but wasn’t diagnosed with sickle cell disease until middle age. He began playing the trumpet at age 13 and at 18 convinced his parents to allow him to move to New York City to study at the prestigious Juilliard School. It was a ploy so he could jam with the musical masters of his day and join the band of his idol, Charlie Parker. He was soon leading his own projects and bands, solidifying a career that spanned decades. His album “Kind of Blue” is one of the most successful and influential jazz albums in history. He passed away in 1991, but his music lives on. Take some time to listen to his music today and pay tribute to this influential sickle cell warrior.

 

In Memory of Carlton Haywood, Jr., Ph.D.

We are devastated to share the news of the passing of Carlton Haywood, Jr., Ph.D., on December 31, 2021. Carlton was an accomplished academic whose research focused on bioethics and sickle cell. His experiences as a sickle cell warrior guided his work as a scholar and an advocate. As such, Carlton was a well-respected and celebrated voice in both the sickle cell and research communities. 
Carlton grew up in Atlanta, Georgia, and never let sickle cell get in the way of his achievements. He received a bachelor’s and master’s degree from the University of Virginia and completed a doctorate of philosophy in health policy and bioethics in the department of health policy and management at the Johns Hopkins Bloomberg School of Public Health. After completing his studies, he became a faculty member at the Berman Institute and the department of hematology at the Johns Hopkins School of Medicine.
“Carlton had a unique perspective as both an academic professor at a prestigious institution and an individual living with sickle cell disease who could link the academic theories to ‘lived experience,'” said Lewis Hsu, M.D., chief medical officer of the Sickle Cell Disease Association of America. “He generated some of the first scholarly publications on the injustices suffered by individuals with sickle cell disease. He called attention to issues that inhibit sickle cell disease care and research and worked effectively to resolve them. His quiet determination was inspiring to me.” 
He was a dedicated sickle cell advocate and spent his career studying important issues to the sickle cell community, including patient-centered care and trust in the medical industry. His research also addressed the intersections of bioethics and clinical research, and his work earned him national recognition and helped inform sickle cell policy. We invite you to read more about Carlton’s life and career in this article.
SCDAA mourns the loss of Carlton, and we send our deepest condolences to his family and friends. A memorial will be planned at a later date.

 

A Word From Our Sponsor: bluebird bio

Thank you to bluebird bio for their generous support of our 49th Annual National Convention!

How can you help to spark change in Sickle Cell Disease (SCD)? By staying proactive in sickle cell care and planning for the future. Be the Spark, a platform for education and information brought to you by bluebird bio, was created in collaboration with advocacy organizations to drive change in sickle cell. bluebird bio believes that achieving change in sickle cell starts with listening, making no assumptions, and amplifying the voices of people who are already working tirelessly to make a difference. bluebird bio is committed to supporting the sickle cell community and strives every day to help sickle cell gain the recognition it deserves. Visit SparkSickleCellChange.com to build on your sickle cell knowledge and learn how you can spark the conversation for change!

This information and the content on SparkSickleCellChange.com is not intended to replace discussions with your healthcare provider. Please discuss any questions with a US healthcare professional.

Learn more about bluebird bio at: www.bluebirdbio.com  

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   

The Hibiscus Study is Enrolling Volunteers

Study Title:
An adaptive, randomized, placebo-controlled, double-blind, multi-center study of oral FT-4202, a pyruvate kinase activator, in patients with sickle cell disease (SCD).
Study Description:
The Hibiscus Study™ is evaluating the safety and effectiveness of an investigational medication compared with placebo (inactive drug) in people 12 to 65 years of age with SCD. The study is evaluating if the investigational medication can improve anemia and reduce the number of pain crises per year.
Eligibility Criteria:
Eligible participants must:

  • Be 12 to 65 years of age
  • Have a confirmed diagnosis of SCD
  • Have had at least 2 pain episodes (vaso-occlusive crises) within the past 12 months
  • Not have had more than 10 vaso-occlusive crises within the past 12 months
  • Be willing and able to follow all study requirements and study visit schedules

There are additional eligibility requirements, which the study doctor will explain to you. To learn more about study participation, and to see if you or someone you know may qualify, visit HibiscusSC.com or call 844-608-0808 to complete the prescreening questionnaire.  

Walk with the Stars to support Sickle Cell Disease Association of America

Sickle Cell Disease Association of America will hold the eighth annual Walk with the Stars fundraiser, where participating teams and individuals can track their walk, run, dance or movement steps while raising funds to support the association in preventing the complications of sickle cell disease through awareness, education, advocacy and research.
Walk with the Stars will kick off May 22 at 10 a.m. with a Facebook Live event and culminate in a virtual Walk with the Stars celebration July 10 from 9 to 11 a.m., recognizing participants’ steps and success.
“Join family members, loved ones, friends and co-workers for Walk with the Stars to help support a universal cure for sickle cell disease,” said Beverley Francis-Gibson, president and CEO of Sickle Cell Disease Association of America. “Walking, running and moving for Walk with the Stars not only benefit participants but will change the lives of those affected by sickle cell disease. Together we can break the sickle cycle.”
Sickle Cell Disease Association of America has raised a total of over $500,000 through Walk with the Stars to support better treatments and improvements in the quality of health for individuals, families and communities affected by sickle cell disease.
To learn more and register for Walk with the Stars, visit bit.ly/SCDAAwalk2021. Sponsorships are available by emailing bfrancis-gibson@sicklecelldisease.org.