||Children's National Hosts International Leaders to Raise Awareness About Sickle Cell Disease
June 19, 2009
For Immediate Release: June 19, 2009
Washington, DC – Children’s National Medical Center hosted a program in honor of the first United Nation’s Sickle Cell Awareness Day. Ambassador Abdoulaye Diop of Mali served as the honorary chair of the event, and was joined at the podium by Ambassador Hawa Ndilowe of Malawi. Bobby Engram, of the NFL’s Kansas City Chiefs and the Bobby Engram Foundation was a featured speaker. His 11-year-old daughter, Bobbi, suffers from sickle cell disease.
Joseph Wright, MD, MPH
The United Nations created Sickle Cell Awareness Day to recognize sickle cell disease as a global health crisis. Calling sickle cell anemia one of the world’s foremost and, at times, lethal genetic diseases, the UN adopted the resolution urging member states to raise awareness on June 19 of each year.
“We are thrilled to have the opportunity to host Ambassador Diop, Ambassador Ndilowe, Bobby Engram and his family, and the other dignitaries who attended the event. Our goal is to bring attention to this challenging disease and relief to the children who suffer from it,” said Joseph Wright, MD, MPH, senior vice president of the Child Health Advocacy Institute at Children’s National. “Many people think of sickle cell as a disease that affects only African Americans, but today we have shown the diversity of cultures that deal with this genetic disorder.” Sickle cell continues to be a disease that is under served, even in the United States. Among the points stressed by speakers over the two days of events were:
- 100,000 people in the United States suffer from sickle cell disease
- Sickle cell is seen in people of Portuguese, Spanish, Italian, Greek, and Turkish descent. Sickle cell disease also appears in Middle Eastern countries and Asia.
- Sickle cell disease shortens life expectancy. Currently the life expectancy for someone with sickle cell disease is about 50 years.
- There is no readily acceptable, easily available cure for sickle cell disease.
- Treatments are not always effective.
- Continuity of care across the country is spotty at best.
- There is little or no transitional care for pediatric patients moving into adult care facilities.
Contact: Emily Dammeyer/Susan Muma, 202-476-4500
Children's National Medical Center, located in Washington, DC, is a proven leader in the development of innovative new treatments for childhood illness and injury. Children’s has been serving the nation's children for more than 135 years. Children’s National is proudly ranked among the best pediatric hospitals in America by US News & World Report and the Leapfrog Group. For more information, visit www.childrensnational.org.