BAY AREA HIV/AIDS AND HEMOPHILIA COMMUNITIES COMMEMMORATE 26th ANNIVERSARY OF RYAN WHITE CARE ACT WITH STORYTELLING AND EDUCATION CAMPAIGN
Video Storytelling Booth and Documentary Film Screening bring Bay Area AIDS and Hemophilia Communities together to heal and reflect after three decades.
WHAT: This week marks twenty-six years since the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was signed into law, creating the most comprehensive federal program that provides services exclusively to people living with HIV. At the time, more than 150,000 AIDS cases had been reported in the United States, and more than 100,000 of those people had died.
A catalyst for the passage of the Ryan White CARE Act was the tragedy of how a miracle treatment for hemophilia became an agent of death for thousands of people. Faced with evidence that treatment for their disorder was contaminated, the hemophilia community launched a powerful and inspiring fight to right the system that failed them and to make it safer for all.
To commemorate this important milestone in the fight against HIV/AIDS, to help capture how one of the worst medical disasters of the 20th Century occurred, and out of this tragedy, how a new era of safe and effective bleeding disorder treatment products emerged, the National AIDS Memorial Grove and the HIV Story Project are partnering with the Northern California Hemophilia Foundation and the UCSF Adult Hemophilia Group to help tell the story of how the hemophilia community was impacted by the HIV/AIDS epidemic and educate the public about the issues people still face today.
A press conference will be held to launch a Video Storytelling Booth that will allow survivors in the Bay Area to tell their personal stories as part of The Surviving Voices Hemophilia Project, which through the eyes of medical researchers, government regulators, hemophiliacs who survived, and family members of those who perished, will capture and curate the epidemic through personal stories.
The Video Storytelling Booth will be available in the Bay Area for people to record their personal stories on Friday August 19 and Monday, August 22 through Thursday, August 25 from 11 am – 4 p.m. at the Hemophilia Foundation of Northern California, 6400 Hollis Street, Suite 6 in Emeryville. Bay area residents interested in sharing their stories can call 510-658-3324 or visiting hemofoundation.org.
The stories will be part of a public service campaign that will premier on World AIDS Day (December 1st) at the National AIDS Memorial Grove where the Hemophilia Community will be honored with the Thom Weyand Unsung Hero Award.
As part of the weeklong commemoration of The Ryan White CARE Act, the public is also invited to attend a FREE community screening of Marilyn Ness’s powerful documentary Bad Blood, which chronicles the worst medical disaster in U.S. history. The screening will take place on Sunday, August 21 at 4:00 p.m. at UCSF Parnassus Campus School of Nursing Theatre Room N-225 (513 Parnassus Blvd in San Francisco). RSVP’s requested to Sonam.Choden@ucsf.edu.
WHEN/ Press Conference, Unveiling of Storytelling Booth and Public Education Campaign
WHERE: Thursday, August 18, 2016 @ 11:00 a.m.
Hemophilia Foundation of Northern California
6400 Hollis Street, Suite 6
Emeryville, CA
WHO: Survivors sharing their personal stories; Leaders and advocates for the hemophiliac and HIV/AIDS communities, including:
· Patrick Dunlap, CEO, Hemophilia Foundation of Northern California
· Marc Smolowitz & Jorg Fockele, Co-Founders, The HIV Story Project
· John Cunningham, Executive Director, National AIDS Memorial Grove
· Dana Francis, UCSF Medical Center Adult Hemophilia Program
VISUALS: Personal stories of San Francisco/Bay Area hemophiliac survivors and advocates; Filming of their stories in the StoryTelling Booth being unveiled for the public to also film their stories.
http://generationshiv.org