NATIONAL CONFERENCE HIGHLIGHTS SICKLE CELL AWARENESS MONTH

            The Sickle Cell Disease Association of America, Inc. (SCDAA) will hold its 29^th Annual National Convention, September 19-22, 2001 in Phoenix, Arizona.  The conference, “A Focused Future:  Empowerment through Education and Advocacy,” is the centerpiece of National Sickle Cell Awareness Month activities designed to increase awareness of this genetic disease which continues to affect more than 70,000 men, women and children in this country.  An estimated 2.5 million Americans carry the trait.  While better treatment and program services have improved the quality of life for individuals with the disease, there is still no universal cure. 

Empowering these individuals and their families through educational courses on the latest developments in treatment and research while advocating for increased funding will be the key objectives of the conference.

            Those slated to appear as keynote speakers at the conference, hosted locally by SCDAA Member Sickle Cell Society of Arizona, include Congressional Representatives Donna Christian Christensen, M.D. (D-VI), Chair of the Congressional Black Caucus Health Braintrust and Jesse Jackson, Jr. (D-IL) Member, House Labor –HHS– Education Appropriations Sub-committee.  There will also be a special tribute made to SCDAA National Celebrity Spokesperson and sickle cell disease patient, Tionne “T-Boz” Watkins of the award winning vocal group “TLC.” 

The interactive and educational program will focus on strengthening the infrastructure of the sickle cell community while developing advocacy and collaborative networks designed to elevate sickle cell disease on the national agenda as a global healthcare problem.  Officials say the meeting will play a major role in educating those who are working toward finding quality of life enhancing treatments, an eventual universal cure and advocating for increased funding in the areas of research and program services.

The goals and objectives of the offering have been defined by the association’s convention committee chaired by SCDAA Chief Medical Officer Lennette J. Benjamin, M.D., Associate Professor of Medicine/Clinical Director, Albert Einstein College of Medicine at the Montefiore Hospital Medical Center in New York.  Benjamin says the overall programming will be balanced between consumer needs, community based organization services, advocacy, research and treatment.

“For the opening day, we have planned a number of professional development and education sessions for participants as well as technical assistance programs for SCDAA Member Organizations. A symposium developed by individuals with sickle cell anemia, will also be offered,” Benjamin explained. 

“Thursday’s programming will feature The Dr. Charles F. Whitten Lecture and presentations with emphasis on advocacy, education and policy.  Friday is medical research and clinical education day and will include The Dr. Clarice Reid Lecture.  Additional programming will focus on new therapies for sickle cell disease, their application and availability.  On Saturday, a plenary session examines government relations, media, policy and public relations,” she concluded.

Augmenting the program components will be a series of events ranging from activities hosted by the local host chapter to the SCDAA Chairman's Reception and the Dorothy Boswell Gala Awards Banquet. The introduction of the 2001-2002 SCDAA National Poster Child and winners of the Kermit B. Nash Scholarship and William F. Finn Triumphant Adult Awards are other highlights.

Observation of Sickle Cell Awareness Month originated in 1975 when SCDAA and its Member Organizations began conducting month long events in September to call attention to the incurable genetic disease and the need to address the problem at both the national and local level.  The effort to have Sickle Cell Awareness Month officially recognized succeeded in 1983 when the House of Representatives unanimously passed a resolution, introduced by the Congressional Black Caucus, asking President Reagan to make the designation. The president signed the resolution in August of the same year.  For conference and Sickle Cell Awareness Month information call (800) 421-8453.  Conference information is also posted on the SCDAA website at www.sicklecelldisease.org.