In Documentary, Stories of Lupus, Six People Talk About Their Experiences
This grant helped fund final editing, distribution, and outreach for Stories of Lupus, a 27-minute film examining the experiences of six people with lupus and their families.
Lupus is a potentially life-threatening autoimmune disease that may involve the skin, joints, blood, and other parts of the body. Producers Marcia Urbin Raymond and Karin Mellberg, who themselves have lupus, shot the film with a professional production team on a 3,200-mile journey to eight cities during National Lupus Awareness Month in October 1997.
According to the producers, the documentary's primary objective is to open communication and stimulate discussion about chronic illness and the need for better systems of care for lupus. The disease afflicts some 2 million people (primarily women) in the United States.
Inspiration for the project came from the work of the late Charles Kuralt, who traveled and reported throughout the country for his On the Road feature for CBS television. (Kuralt died of complications of lupus in 1997.) Kuralt's CBS colleague Charles Osgood narrated the film.
Stories of Lupus aired 390 times on more than 200 Public Broadcasting Service (PBS) television stations around the country in 1999. In addition, 5,000 videos were duplicated and distributed to the 150 Arthritis Foundation chapters and the 100 Lupus Foundation of America chapters, as well as women's organizations, hospitals, and libraries across the nation. Collateral materials were developed and distributed with the film with the assistance of the Arthritis Foundation and the Lupus Foundation.
The film won a Freddie Award in the 1999 International Health & Medical Media Awards sponsored by Time Inc. Health. A companion Web site received more than 200,000 visits over the duration of the project (the site no longer operates). The site won an Editors' Choice Award from HealingWell.com and was featured on other Web sites, including WebMD and Yahoo. Articles on the film appeared in nine publications, and the producers were interviewed on five television shows in major cities.
The Robert Wood Johnson Foundation (RWJF) supported the project with partial funding of $78,000 from August 1999 to July 2000.
The total budget for the project was $375,000. Other major funders included the Robert W. Johnson IV Charitable Trust, the Fuller Foundation, the Joseph Drown Foundation, and other private and corporate donors. Following the conclusion of this project, Raymond began work on a sequel to the film, which follows five of the six people interviewed for the original film. RWJF was approached for additional funding but declined to participate.
GRANT DETAILS & CONTACT INFORMATION
Documentary Video on Living With a Chronic Disease
Lupus Foundation of America (Rockville, MD)
Dates: August 1999 to July 2000
Marcia Urbin Raymond
(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)
Stories of Lupus, a 27-minute film examining the experiences of six people with lupus and their families. Palo Alto, Calif.: Mosaic Productions LLC, 1999. Aired 390 times on more than 200 Public Broadcasting Service stations around the country in 1999. 5,000 copies were duplicated and distributed to the 150 Arthritis Foundation chapters and the 100 Lupus Foundation of America chapters.
World Wide Web Sites
www.storiesoflupus.com provided a forum for people living with lupus to share their life stories of chronic illness. The site received an estimated 200,000 visits over the duration of the project. The site, which no longer operates, won an Editor's Choice Award from HealingWell.com.
Press Kits and News Releases
WNET-TV (Public Broadcasting Service [PBS], New York, N.Y.) distributed approximate1y 200 press kits to targeted print and electronic media across the nation. An additional 100 press releases were sent to the top 30 dailies nationally, as well as local and regional newspapers, women's consumer magazines, and health publications. Targeted releases to television critics were sent prior to television broadcasts on PBS.
Lupus Foundation of America Inc.'s National Newsletter, February 1998.
"On the Road to Recovery," in Woman's Day, August 4, 1998.
"Working for a Cure," in The San Francisco Business Times, August 1420, 1998.
Arthritis Foundation/Southern California Chapter's Newsletter, August 1998.
"Discovering Life Through a Life-Threatening Disease," in The Palo Alto Daily News, September 30, 1998.
"Giving Lupus a Face," in The Los Altos Town Crier, November 18, 1998.
"Stories of Lupus," in The San Jose Mercury News, December 17, 1998.
"Lupus: Unpredictable, Misunderstood," in The Cincinnati Enquirer, October 6, 1999.
"TV Release of Stories of Lupus," The Los Altos Town Crier, October 1999.
TV Guides (National), October 1999.
"Shedding light on lupus," in The Willow Glen Resident, January 12, 2000.
"Health Beat with Pam Moore," KROA-TV, San Francisco, Calif., November 1998.
"Bay Sunday with Juliette Goodrich," EFIX-TV, San Francisco, Calif., December 1998.
"Hard Copy," WNBC-TV, New York, N.Y., April l999.
"Debra Duncan Show," KTRK-TV, Houston, Texas, March 2, 2000.
"Talkin' Pictures with Jan Wahl," KRON-TV, San Francisco, Calif., March 9, 2000.
Report prepared by: Dexter Hutchins
Reviewed by: Richard Camer
Reviewed by: Robert Crum
Program Officer: Victoria Weisfeld