The Sickle Cell Disease Association of America, Inc. (SCDAA) was awarded $2.9 million annually for the next four years from the Health Resources & Services Administration (HRSA) for the Sickle Cell Disease Newborn Screening Follow-up Program in June 2017. With these funds, SCDAA is continuing its efforts to establish the national infrastructure to ensure that individuals diagnosed with sickle cell disease (SCD) receive appropriate care coordination and follow-up services including counselling, education materials and access to a medical home.

SCDAA has identified 16 community based organizations (CBOs) in fifteen states, to receive $2,033,080, 70% of its 2017 HRSA grant award, to support them with the capacity to identify, educate and link patients to care in 15 states across America.

Camp Cell-A-Bration is a week-long camp for kids aged 6-14 with sickle cell disease. Many of our children with sickle cell disease have suffered strokes, jaundice, pain crisis, chronic blood transfusions, surgeries, acute chest syndrome, and damage to their internal organs. Although these children battle this life-threatening disease every day, we want to make sure they enjoy being KIDS!

Camp Cell-A-Bration will be held virtually this year from Monday, August 2nd, 2021 to Friday, August 6th, 2021.

This event has ended.

The Board of Directors for Sickle Cell Disease Association of America, Inc. (SCDAA) announces the hiring of Beverley Francis-Gibson as its 5th President & CEO in its 45 year history. After an extensive national search, Francis-Gibson emerged as the best fit for the organization. She brings over 20 years of diverse experience as a nonprofit leader, and most recently served as the Executive Director for the National Alliance on Mental Illness of Howard County (NAMI HC) in Columbia, Maryland. Over her career, Francis-Gibson has led organizations in achieving their mission, vision and strategic priorities.

Francis-Gibson received both her bachelor’s degree in Public Relations & Broadcasting and her master’s degree in Industrial & Community Counseling from Eastern Kentucky University.

“SCDAA is the largest nonprofit advocacy group in America organized to advance initiatives aimed at improving the quality of life for those affected by sickle cell disease, and I am very much looking forward to working with SCDAA’s Board of Directors, staff, and membership,” said Francis-Gibson.

Gamida Cell, a leading cellular and immune therapeutics company, today announced two presentations from its NiCord programs in high-risk hematologic malignancies and sickle cell disease (SCD) at the 2018 BMT Tandem Meetings, held from February 21 – 25 at the Salt Palace Convention Center in Salt Lake City, UT.

Details for the presentations are as follows:

-NiCord Single Unit Expanded Umbilical Cord Blood Transplantation (UCBT): Final Results of a Multicenter Phase I/II Trial; Mitchell Horwitz, M.D., Session G: Alternative Donor / Immune Reconstitution, Feb. 23, 2018 at 10:30 a.m. MT in Ballroom I

-A Novel Therapy for Sickle Cell Disease (SCD): Co-Transplantation of NiCord [Ex-Vivo Expanded Umbilical Cord Blood (UCB) Progenitor Cells with Nicotinamide] and an Unmanipulated Unrelated UCB Graft Leads to Successful Engraftment and Cure of Severe SCD; Suhag H. Parikh, M.D., Poster Session 1: Cord Blood, Feb. 21, 2018 at 6:45 p.m. MT in Hall E

For more than half-a-century, an organization for African-American women has quietly served those less fortunate in cities across the globe. Recently, the women of The Links, Incorporated partnered with St. Jude Children’s Research Hospital to address sickle cell disease.

Children diagnosed with sickle cell anemia face unique health challenges. To help these children live long and crisis-free lives, The Links Foundation, Incorporated presented its 2018 Legacy Grant to St. Jude.

The million-dollar gift will help the hospital continue working with patients diagnosed with the inherited blood disease.

St. Jude’s founder, Danny Thomas, envisioned a place where children would get the care they needed to survive life-threatening diseases. Research and treatment of sickle cell disease began when the hospital opened in 1962.

Parker Todd, 13, of Queens, was joined by 45 other sickle cell advocates, doctors, nurses and pharmaceutical representatives in Albany to champion a new sickle cell bill.

Many patients on a panel were able to share their stories with lawmakers educating them on the impact the disease has on hundreds of thousands of people who suffer from the illness.

The group took a tour of the state capital and was introduced on the Assembly Floor. The sickle cell treatment bill is currently pending in the NYS Assembly and Senate. Parker and the other advocates hope the advocacy day has made progress so the bill will be fully funded and approved.

Global Blood Therapeutics, Inc. (GBT) today announced that four abstracts related to the voxelotor program in sickle cell disease will be presented during the Foundation for Sickle Cell Disease Research’s (FSCDR) 12th Annual SCD Research and Educational Symposium in Washington, D.C., taking place June 15-17, 2018. 

Four encore abstracts have been accepted, including three for oral presentation. Additionally, Kenneth R. Bridges, M.D., vice president, medical affairs at GBT, will be discussing voxelotor as part of the Investigational New Drugs, Therapeutic and Device Symposium on Friday, June 15, from 4:30-6:30 p.m. Eastern Time (ET). The abstracts are now available for symposium attendees through the FSCDR 2018 app.

The California Institute for Regenerative Medicine (CIRM), California’s Stem Cell Agency, today invested almost $10 million in stem cell research targeting sickle cell disease and cancer at its February Board meeting.

The CIRM Board awarded $5.74 million to the City of Hope to fund a Phase 1 clinical trial testing a stem cell-based therapy for adult patients with severe sickle cell disease (SCD). SCD refers to a group of inherited blood disorders that cause red blood cells to take on an abnormal, sickle shape. Sickle cells clog blood vessels and block the normal flow of oxygen-carrying blood to the body’s tissues. Patients with SCD have a reduced life expectancy and experience various complications including anemia, stroke, organ damage, and bouts of excruciating pain.