Tag Archives: Events

Sickle Cell Awareness Month 2023 Events

All across the country, our member organizations are hosting exciting events for Sickle Cell Awareness Month this September. Check out the list below to find an event near you.

Alabama

California

Connecticut

Delaware

Florida

Georgia

Illinois

Kansas

Louisiana

Maryland

Michigan

Minnesota

Missouri

New Jersey

New York

Ohio

Oklahoma

South Carolina

  • Sept. 30: 5K Race | Columbia, South Carolina
    Hosted by the James R. Clark Memorial Sickle Cell Foundation

Tennessee

Texas

 

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.  

GBT and SCDAA to Host 8th Annual Sickle Cell Disease (SCD) Therapeutics Conference

GlobalBlood Therapeutics, Inc. (GBT) (NASDAQ: GBT) and the Sickle Cell Disease Association of America, Inc. (SCDAA) announced that they will host the 8th Annual Sickle Cell Disease (SCD) Therapeutics Conference on Tuesday, September 10, 2019, at The Westin Washington, D.C. U.S. Representative Robin Kelly, chair of the Congressional Black Caucus Health Braintrust, will deliver the keynote address.
Taking place during National Sickle Cell Awareness Month, the SCD Therapeutics Conference will highlight the latest medical advances and future trends in the treatment of patients with SCD. In addition to Rep. Kelly’s keynote address, the program will feature panel discussions and presentations from leading physicians, patient advocates and healthcare policymakers on a range of issues and topics, including the impact of SCD on the brain and cognitive function and hot topics in SCD from the perspective of patients and caregivers. The Conference will also feature updates from the American Society of Hematology Research Collaborative’s SCD Clinical Trials Network and the Sickle Cell Community Consortium, as well as presentations from biopharmaceutical industry leaders.
“We are honored to host, in partnership with the Sickle Cell Disease Association of America, the annual SCD Therapeutics Conference for the third year in a row, as it will bring together patient advocates, opinion leaders and clinical experts,” said Ted W. Love, M.D., president and chief executive officer of GBT. “Support and collaboration across the broader community is essential as we work together to try to fundamentally transform how SCD is treated. We are optimistic that this year’s Conference will spur important discussions as we continue to pursue our shared mission of making a meaningful difference in the future of SCD care.”
“As co-hosts of the annual SCD Therapeutics Conference, we are thrilled to help advance meaningful discussions aimed at understanding and addressing the needs of the SCD community,” said Beverley Francis-Gibson, B.A., M.A., president and chief executive officer of SCDAA. “It is necessary that we continue to learn and grow based on the latest advancements that will be discussed at the Conference, in addition to understanding future issues and trends for treating patients with SCD.”
The 8th Annual SCD Therapeutics Conference will feature the following speakers and panelists:

  • Biree Andemariam, M.D., Associate Professor, Department of Medicine, University of Connecticut
  • Lakiea Bailey, Ph.D., Founder, Sickle Cell Community Consortium
  • Velvet Brown-Watts, Founder-Chairperson, Supporters of Families with Sickle Cell Disease
  • Chuck Chesson, Ph.D., Director, Sickle Cell Disease Clinical Trials Network
  • Jew-EL Darbone, Sickle Cell Patient Advocate
  • Jeremie Estepp, M.D., Medical Director, Clinical Translation Program in Hematology, St. Jude Children’s Research Hospital
  • Beverley Francis-Gibson, B.A., M.A., President and Chief Executive Officer, SCDAA
  • André Harris, CHW, Sickle Cell Patient Advocate
  • The Honorable Robin Kelly, Chair, Congressional Black Caucus Health Braintrust, United States House of Representatives
  • Allison King, M.D., M.P.H., Ph.D., Associate Professor of Occupational Therapy, Pediatrics, Medicine, Surgery (Prevention and Control) and Education,
  • Washington University School of Medicine
  • Hertz Nazaire, Sickle Cell Patient Advocate
    Additionally, multiple companies that are developing treatments for patients with SCD will present at the Conference. They include Addmedica, CRISPR Therapeutics/Vertex, Cyclerion, Emmaus Life Sciences, GBT, Imara and Sanofi. To ensure that those who are unable to attend the Conference can benefit from the presentations and information sharing, GBT is collaborating with Sickle Cell Warriors, an SCD community organization, to livestream from the Conference on the organization’s Facebook page at www.facebook.com/SickleCellWarriors. Following the event, GBT will post videos on its corporate YouTube channel. For more information about the Conference or to register to attend, visit http://www.scdconference.com.

 

Shine the Light on Sickle Cell” Campaign Celebrates the 10th Anniversary of World Sickle Cell Awareness Day

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 10th 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 19th 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.
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