Research Center at U. T. Dallas to Help Mark National Sickle Cell Disease Awareness Month
September Events Planned Around Theme 'Discover the Cure'
RICHARDSON , Texas (Aug. 11, 2005) - The Sickle Cell Disease Research Center (SCDRC) at The University of Texas at Dallas (UTD) next month will help raise public awareness of the deadly genetic disorder that strikes primarily persons of African descent through a host of events, ranging from an open house at the center's newly renovated offices to a gene therapy seminar conducted by a world-renowned sickle cell researcher. The local activities will be part of a National Sickle Cell Awareness Month campaign to be held throughout the country during September. The goal of the effort, whose theme is "Discover the Cure," is to call attention to the effects of sickle cell disease and highlight the efforts to find a cure.
"Dallas is a major front in the war on sickle cell disease and we want to call attention to the innovative research and treatments being developed locally to ameliorate – and perhaps eventually cure – this devastating disorder,” said Dr. Betty Pace, a medical doctor and director of the SCDRC. “We invite members of the public to participate in one or more of our activities next month in order to increase their knowledge of sickle cell disease.”
Bolstered by a $7.8-million grant from the National Institutes of Health (NIH), UTD and a sister institution, The University of Texas Southwestern Medical Center at Dallas, along with other local medical facilities, in 2003 formed a sickle cell research and treatment center in Dallas. It became the first NIH Comprehensive Sickle Cell Center in the Southwest and one of only 10 such centers in the U.S.
Under the collaborative arrangement, basic scientific research on the disease is carried out at both UTD and U. T. Southwestern, while clinical studies involving patients is conducted by U. T. Southwestern, principally at Children's Medical Center of Dallas.
Sickle cell disease is an inherited blood disorder that affects the hemoglobin protein found in red blood cells. In persons with the disease, the red blood cells become sickle or crescent shaped due to the abnormal hemoglobin and often become lodged in blood vessels. The lack of blood flow as a result of these blockages can result in tissue damage, severe recurrent pain, strokes and organ damage.
Ninety-five percent of sickle cell cases affect individuals of African descent. However, the disease is also found in limited numbers in persons who trace their ancestry to South and Central America, several Middle Eastern countries, India, Italy, Greece and Turkey.
In the United States, approximately 80,000 African-Americans suffer from sickle cell disease. Millions are affected worldwide. One in every 350 African-American babies born in the U.S. has the disease and one in eight are carriers of sickle cell trait, making it the number one genetic disease in that population.
“A cure in the form of bone marrow transplantation is available to a limited number of children with sickle cell disease,” said Pace. “However, early diagnosis through newborn screening, better medical management and education have improved the quality of life and survival for others who suffer from the disease.”
A universal cure, though, remains elusive. Pace and her colleagues at UTD are studying gene-based therapies as a possible cure for sickle cell. This research involves trying to unlock genetic “on-off switches” to fool the body into healing itself.
Many in the medical community believe that gene therapy is the most promising area of sickle cell research.
The lineup of SCDRC activities during September, all of which are open to the public, includes:
- An open house and ribbon-cutting ceremony on Sept. 1 at the newly expanded and renovated SCDRC offices in Berkner Hall. Due to an expected large number of members of the campus community and the public at the event, a “virtual ribbon-cutting” will be held at a different location, the Green Center Commons. That will be hosted by film and television actress Kiki Shepard and will run from 10 a.m. to 10:30 a.m. The SCDRC offices, Berkner Room 3.204, will be open for visits from 9 a.m. to 10 a.m. and from 10:30 a.m. to 1 p.m.
- A sickle cell disease awareness art display, featuring the works of artists Hertz Nazaire and Daniel Rodney, in the Visual Arts Building, from 10 a.m. to 4 p.m. daily Sept. 1 – 30.
- A seminar on Sept. 30 titled “Renaissance of Sickle Cell Research: Discover the Cure” by noted researcher Philippe Leboulch, M.D., associate professor, Harvard Medical School, Brigham & Women’s Hospital, from 3:30 p.m. to 5 p.m. in the McDermott Library auditorium.
In addition, the center next month will sponsor an education awareness night on the UTD campus for college students and will also participate in two fundraising events, a golf tournament in Dallas and a silent auction in Fort Worth, being conducted by Sickle Cell Disease Association of America chapters in those cities.
For additional information about SCDRC activities for Sickle Cell Disease Awareness Month, please contact the center’s administrative assistant, Judy Du, at 972-883-6230.
- Updated: February 6, 2006