New International Media Partnership Will Enhance Awareness Efforts and Increase Awareness about Sickle Cell Disease and Sickle Cell Trait
Sickle Cell Disease Association of America, Inc. (SCDAA) and the African Sickle Cell News & World Report are proud to announce a new international media partnership that will enhance global awareness efforts about sickle cell disease (SCD). The partnership will use digital platforms and print materials to share educational information with individuals living with SCD and their families and the general public. The partnership will work to dispel myths about the disease, share patient stories and treatment options and engage new audiences.
“Some research estimates that about 240,000 babies are born with sickle cell disease in sub-Saharan Africa every year, and that at least half of such children die before age five,” said SCDAA President and CEO Beverley Francis-Gibson. “Education and early diagnosis is paramount to extending life expectancies and saving lives, and that is why this partnership is so important. African Sickle Cell News & World Report focuses on sharing information about this disease from around the world. Together, we can enhance our efforts to educate and advocate on behalf of those affected by this disease.”
SCD is a global health problem affecting millions of people around the world. It is estimated that approximately 100,000 Americans have the disease, and more than 1,000,000 worldwide have sickle cell trait. Each year, approximately 1,000 babies in the United States are born with SCD, and there is no universal cure for this life-threatening disease.
“We are excited to partner with SCDAA, the leading national voice for the sickle cell community,” said Ayoola Olajide, Editor, African Sickle Cell News & World Report. “Through education, awareness and advocacy, we seek to collaboratively bring worldwide attention to sickle cell disease and to extend SCDAA’s reach internationally. We are looking forward to this partnership and to continuing to support the international sickle cell community in this collaborative initiative.”  

Sickle Cell Disease Association of America, Inc. (SCDAA) and The Pain Community are proud to announce a new partnership that will increase education and awareness information about comprehensive integrative pain management and wellness to support individuals living with sickle cell disease (SCD) and their family members. The partnership will use digital platforms and other collateral to share important resources and to engage those affected by SCD in achieving better health and wellness in partnership with their healthcare providers.
“Pain is the most common complication of SCD, and one of main reasons that people with SCD go to the emergency room or hospital,” said SCDAA President and CEO Beverley Francis-Gibson. “The Pain Community shares with SCDAA the goal of improving the quality of life for individuals living with pain, and SCDAA looks forward to working with them to help empower those living with sickle cell disease by providing education and advocacy information for managing pain.”
SCD is a global health problem affecting millions of people around the world. It is estimated that approximately 100,000 Americans have the disease, and more than 1,000,000 worldwide have sickle cell trait. Each year, approximately 1,000 babies in the United States are born with SCD, and there is no universal cure for this life-threatening disease.
“The Pain Community is thrilled to partner with the Sickle Cell Disease Association of America, Inc.,” said TPC Board Chair Karen Keifer, MSN, APN, NP-C, RN-BC. “This affiliation is a great opportunity to amplify SCDAA’s work and share the educational, coping and advocacy resources available that are free at PainCommunity.org We look forward to ensuring that the sickle cell community has resources to help manage their pain and improve their quality of life.”  

Company Also Launches Disease Awareness Campaign to Raise Awareness Among Physicians About the Silent Damage Caused by Sickle Cell Disease
Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT), in partnership with sickle cell community-based organizations (CBOs), today announced the launch of Sickle Cell Speaks, a national campaign focused on breaking down stigmas associated with sickle cell disease (SCD).
Sickle Cell Speaks is designed to bring together a community of people, from patients to caregivers to friends and relatives, whose lives are affected by SCD. The campaign shares the individual experiences of those living with SCD through authentic stories from a diverse group of patients and caregivers. Sickle Cell Speaks aims to inspire hope by showcasing stories of strength and to dispel the misconceptions about SCD.
“The sickle cell patient experience is highly varied, and highlighting the personal stories of these individuals, as well as their family and friends, will help grow understanding and awareness of this condition,” said Beverly Francis-Gibson, president and chief executive officer of the Sickle Cell Disease Association of America. “We are proud to partner with GBT to help break down stigmas and make our voices heard.”
Additional partners of Sickle Cell Speaks include Sickle Cell Community Consortium, Sickle Cell 101, Bold Lips for Sickle Cell and Sickle Cell Warriors.
“We are partnering with several CBOs representing the sickle cell community to educate people about SCD and to help break down the barriers, particularly the misconceptions and social stigmas, that affect how those with SCD are viewed by society and which ultimately impact patients’ ability to access quality care,” said Ted W. Love, M.D., president and chief executive officer of GBT. “In addition to this patient-focused initiative, we recently launched a separate campaign aimed at engaging health care professionals and facilitating discussion around the root cause and molecular basis of the disease. Together, our patient and physician campaigns underscore GBT’s commitment to bringing together a broad range of stakeholders, with the goal of improving the lives of people living with sickle cell.”
GBT’s health care professional-focused disease awareness campaign, SCD Silent Damage, seeks to increase attention among physicians regarding hemoglobin polymerization, the molecular
basis of SCD that initiates the sickling of red blood cells and the ensuing cascade of clinical complications that drive high levels of morbidity and mortality in patients.
SCD is a rare, inherited disease that affects approximately 100,000 people in the United States. People of African descent make up 90 percent of this population, although it also affects people of Hispanic, South Asian, Southern European and Middle Eastern ancestry.1 Red blood cells are responsible for carrying oxygen throughout the body. In people with SCD, the normally round and flexible red blood cells become shaped like crescents because the hemoglobin within them polymerizes to form rods, which deform the cells. These rigid, crescent-shaped cells are not able to pass through small blood vessels and tend to break apart easily, leading to anemia, fatigue, episodes of pain and organ damage.  

New National Media Partnership Will Enhance Awareness Efforts and Increase Awareness about Sickle Cell Disease and Sickle Cell Trait
 Sickle Cell Disease Association of America, Inc. (SCDAA) and BLACKDOCTOR.ORG are proud to announce a new media partnership that will enhance national awareness efforts about sickle cell disease (SCD). The partnership will use digital platforms, events and speaking opportunities to share educational information with individuals living with SCD and their families and the general public. The partnership will work to dispel myths about the disease and to share patient stories, treatment options, and initiatives happening within the sickle cell community. The partnership also will engage new audiences, create new media and public relations opportunities and help to break the silence surrounding the disease.
“SCDAA is very excited to announce this media partnership and the new opportunities we have together to help remove stigma and to share stories from those living with sickle cell disease,” said SCDAA President and CEO Beverley Francis-Gibson. “BLACKDOCTOR.ORG provides access to innovative new approaches to health information that helps individuals empower themselves by breaking through the health disparities and gaining better control of their health and well-being. SCDAA looks forward to working with BLACKDOCTOR.ORG to increase awareness about sickle cell disease and to encourage individuals to get involved in our efforts to advocate on behalf of those affected by this disease.”
“SCDAA and its chapters across the country have a long history of serving the sickle cell community through education, awareness and advocacy, and BLACKDOCTOR.ORG is proud to partner with them in our collective goals to empower individuals with their health by raising awareness about sickle cell disease,” said Reginald Ware, BLACKDOCTOR.ORG CEO. “Our media partnership seeks to help SCDAA broaden its reach into the African American community and to get people involved in an important cause. We are looking forward to supporting SCDAA and the sickle cell community in this collaborative initiative.”
About BLACKDOCTOR.ORG
BLACKDOCTOR.ORG is the all-important primary destination that redefines Black health. It aims to be a trusted, daily resource for healthier, happier living, and daily medicine. A Powerful Resource for Black Health BlackDoctor.org is the world’s largest and most comprehensive online health resource specifically targeted to African Americans. BLACKDOCTOR.ORG understands that the uniqueness of Black culture plays a role in our health. BLACKDOCTOR.ORG gives access to innovative new approaches to the health. Guided by the leading physicians, BLACKDOCTOR.ORG provides essential, but difficult to find, health resources, including free referrals to the top Black physicians and health articles that focus on both culturally accurate content and general health topics.  

On June 19, 2019, for World Sickle Cell Awareness Day, Novartis unveiled “The Untold Stories of Sickle Cell Disease,” a worldwide patient story project.
This unique program offers a powerful glimpse into the lives of people touched by sickle cell disease – how it affects their lives and how they work to overcome it. You can see and view the stories at www.UntoldSickleCellStories.com, along with disease education information.
You also can check out a 3-minute worldwide promo video at https://app.box.com/s/idrvk9nrr1fh97x5gr5ymw7iltpd2npa

SiNERGe and Sickle Cell Disease Association of America, Inc. (SCDAA) are collaborating with sickle cell advocacy groups, community-based organizations, hospitals, governments and other key stakeholders in the sickle cell community on Shine the Light on Sickle Cell, a 24-hour awareness campaign to celebrate the 10^th anniversary of World Sickle Cell Awareness Day on June 19, 2019.
June 19th was officially designated by the United Nations as World Sickle Cell Awareness Day. The international awareness day is observed annually with the goal to increase public knowledge and an understanding of sickle cell disease (SCD) and sickle cell trait (SCT), and the challenges experienced by patients and their families and caregivers. On June 19^th and within the month of June, individuals and organizations are hosting a number of activities across the country.
“June 19 is a day of unity and purpose for the sickle cell community,” says Dr. Sophie Lanzkron, associate professor of medicine at the Johns Hopkins University School of Medicine and co-director of the SiNERGe collaborative. “We’re proud to work with the SCDAA to highlight the need for increased awareness about sickle cell disease and its impact on individuals and their families here in the U.S. and abroad.”
SCD is a global health problem affecting millions of people around the world. It is estimated that approximately 100,000 Americans have the disease, and more than 1,000,000 worldwide have sickle cell trait. Each year, approximately 1,000 babies in the United States are born with SCD, and there is no universal cure for this life-threatening disease.
“SCDAA is proud to collaborate with SiNERGe on this important national awareness campaign that has brought together the diverse stakeholders within the sickle cell community to create events, activities and opportunities to bring attention to sickle cell disease and to encourage individuals to get involved in our efforts to advocate on behalf of the those affected by this disease,” said SCDAA President and CEO Beverley Francis-Gibson.
Visit the Shine the Light on Sickle Cell Campaign Facebook page at www.facebook/com/pg/ShineTheLightOnSickleCell/events to learn about the events happening across the country on June 19 and in the month of June.
Click here to read more!  

Innovative Healthcare Programs for Sickle Cell Community
On June 10, 2019, Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT) announced that five nonprofit organizations have been awarded more than $200,000 in grants through the company’s new Access to Excellent Care for Sickle Cell Patients Pilot Program (ACCEL).
Five grant recipients – the Center for Comprehensive Care and Diagnosis of Inherited Blood Disorders (CIBD) and the Sickle Cell Disease Foundation (SCDF), the James R. Clark Memorial Sickle Cell Foundation, The Johns Hopkins University School of Medicine, the MAVEN Project (Medical Alumni Volunteer Expert Network) and the Sickle Cell Foundation of Georgia – will each receive grants to accelerate the development of promising programs that have the potential over time to deliver high-quality healthcare to people living with sickle cell disease (SCD).
“We created the ACCEL program to help address the significant challenges that people living with SCD face every day in accessing quality healthcare in their communities. One solution to addressing these inequities is to encourage non-profit organizations to develop innovative programs that can ensure more children and adults living with SCD get access to high-quality care,” said Jung E. Choi, chief business and strategy officer, and head of patient advocacy and government affairs at GBT. “We are thankful to the many applicants who submitted compelling proposals.”
Click here to read more!  

TUESDAY, JUNE 18, 2019 | 2:30 – 3:30 PM
DIRKSEN SENATE OFFICE BUILDING, ROOM G50
RSVP: Betsy Foss-Campbell, bfoss@asgct.org

Join us for updates on Gene therapy approaches presented by prominent scientists in the field
How policymakers can support the development of treatment options for sickle cell disease
SPEAKERS
Tim Scott, United States Senator
Francesca Cook, MPH, Government Relations Committee member, ASGCT; Senior Director, Pricing and Market Access, REGENXBIO
Julie Kanter, MD, Director of Adult Sickle Cell Program; Associate Professor of Hematology and Oncology, University of Alabama at Birmingham
Punam Malik, MD, Professor of Pediatrics, Marjorie Johnson Chair of Gene and Cell Therapy, Director, Cincinnati Comprehensive Sickle Cell Center; Cancer and Blood Disease Institute, Cincinnati Children’s Hospital
Rodrick Murray, Patient advocate providing a personal story on gene therapy’s value for treating sickle cell disease
Matthew Porteus, MD, PhD, Professor of Pediatrics (Stem Cell Transplantation), Stanford University
David Williams, MD, Senior Vice President and Chief Scientific Officer, Boston Children’s Hospital; Chief, Hematology/Oncology, Boston Children’s Hospital; President, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center; Leland Fikes Professor of Pediatrics, Harvard Medical School
How can policymakers help support the development of gene therapies for sickle cell disease?

• Support the need for robust NIH research funding
• Support appropriations to the sickle cell disease prevention and treatment program and implementation of new surveillance and screening authorities passed in 2018
• Enable novel payment models for approved gene therapies

Hosted in partnership with the Pediatric Hospital Sickle Cell Disease Collaborative and

 

The Alliance to Fight the 40 | Don’t Tax My Health Care, a broad-based coalition committed to repealing the 40 percent tax on employer-provided health benefits welcomes Families USA, Public Sector HealthCare Roundtable, the National Coordinating Committee for Multi-employer Plans (NCCMP), and the Sickle Cell Disease Association of America in the effort to protect the health care coverage upon which more than half of all Americans depend.
Click here to read more.  

Jordin Sparks is a Grammy-nominated, multi-platinum recording artist, but she also wants to spark a conversation about the emotional and social impact of sickle cell disease.
Sickle Cell Disease Association of America, Inc. thanks Jordin Sparks, for your commitment to increasing awareness about sickle cell disease! Click here to read an  article featuring Generation S spokesperson, Jordin Sparks.