30 Oct 2013
- Written by Tri-State Defender Newsroom
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With an eye toward a Campus for Caring, The Sickle Cell Foundation of Tennessee is moving to purchase the historic Hunt-Phelan home and redevelop adjacent real estate.
In the U.S., sickle-cell disease is most prevalent among African-Americans and Hispanics. It strikes one in 375 African-American children. Patients can suffer debilitating pain, swelling, infections, stroke and life-threatening organ damage, which can lead to a shorter life.
The nonprofit envisions a dramatic expansion to serve more people at home and abroad. Foundation representatives are meeting with donors as part of a $2 million campaign to finance the phased-in development of its Campus for Caring during the next few years.
Elements of the plan were shared at the 175-year-old Hunt-Phelan home during an announcement Tuesday morning. Over time, the Campus for Caring would support expanded health and education programs and provide temporary housing and services to sickle-cell patients and their families.
"Memphis people, Memphis institutions and Memphis organizations are national leaders in the search for sickle-cell treatments and a Sickle Cell cure," Foundation Chief Executive Officer Trevor K. Thompson said. "Our initiative will accelerate progress in those areas and expand the scope of our health, education and social services."
About 2.5 million Americans carry the gene and 100,000 live with the disease, one of the most common inherited diseases in America and the most frequent among African-Americans. Sickle-cell disease prevents red blood cells from working properly and individuals with it can suffer a lifetime of debilitating pain and life-threatening symptoms.
Memphis Mayor A C Wharton Jr. endorsed and offered grant-writing and technical assistance for the Foundation initiative.
"Foundation leaders have challenged themselves to build on their successes, extend their reach and serve more people," Wharton said. "Their ambitious vision is one that builds on the promise of the City of Memphis as a city of hope, a city of healing, and merits our support."
Scientists with the University of Tennessee Center for the Health Sciences (UTCHS), the Regional Medical Center at Memphis and St. Jude Children's Research Hospital have pioneered research and treatment of sickle-cell for more than 50 years. And in recent years, Methodist LeBonheur Healthcare has expanded its capacity for Sickle Cell research and patient care as well. The Foundation serves patients of each institution.
Specifically, Sickle Cell Foundation of Tennessee plans to:
• Buy the 175-year-old Hunt-Phelan Home, an historic antebellum mansion on 6.5 acres between the Beale Street and Central Business districts and the medical center, and create a new corporate headquarters and conference center;
• Preserve and open for public view the 10,000-square-foot mansion that billeted U.S. Presidents Andrew Jackson, Martin Van Buren, Andrew Johnson, and Confederate President Jefferson Davis; It also served as Ulysses S. Grant's HQ in 1862 and as a Freedmen's Bureau school for former slaves after the Civil War;
• Develop an accessible primary care medical clinic to serve downtown residents;
• Create dedicated laboratory facilities to expand what is already the largest sickle-cell trait-testing program in the Arkansas- Mississippi-Tennessee region;
• Develop a hospitality center on nearby property with temporary housing for patients and their families when they are in Memphis for sickle-cell treatment;
• Generate revenues from enterprises, including a mixed-use low-rise office building, to fund sickle-cell services in other U.S. cities and some overseas.
"Our mission is to provide social services, including health, education and life skills, to enhance the quality of life and self-sufficiency of individuals living with sickle cell," said Thompson. "Everything we plan builds our capacity and extends our reach to serve more people. We must grow because there are people in pain who need our help."
The Campus for Caring initiative requires Foundation leaders to step out on faith, but they are not stepping out alone. In recent years, the Plough Foundation provided a $1 million grant to help establish an endowed chair in hematology with a joint appointment at UTCHS and Methodist LeBonheur Healthcare.
Three years ago, a community coalition led a $5 million effort to fund The Comprehensive Sickle Cell Center of Memphis at Memphis University Hospital. The effort is a joint venture with Methodist and UTCHS. The 40-bed inpatient unit provides 24-hour acute care and an infusion unit. The outpatient component provides patient education, genetic counseling, social services and psychosocial support for adults.
The ventures continue a longstanding commitment among Memphis institutions to sickle cell research and treatment.
The Diggs-Kraus Sickle Cell Center at the Regional Medical Center in Memphis is affiliated with UTCHS. Formed in 1958, it is named for Lemuel W. Diggs, MD, who provided care for sickle-cell patients in their homes and in his medical school office since the 1920s. In 1952, he was joined by A.P. Kraus, MD, who with Memphian Ann Bell discovered Hemoglobin CC and SC in the mid-1950s. And in 1972, the National Institutes of Health started funding work at the center.
The Diggs-Kraus Sickle Cell Center has provided uninterrupted adult care since the 1950s and continues to do so. The center's clinic – headed since 1993 by Patricia Adams-Graves, MD – provides care for about 600 adults.