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Arts Engine, Inc. (New York, NY) $100,000
Bad Blood: A Cautionary Tale (documentary)
Bad Blood is a 1-hour documentary video for broadcast on national public television that examines a specific period of time in the history of the hemophilia community, circa 1987, when 10,000 people with hemophilia were infected with HIV and hepatitis from blood-based, FDA-approved products. The organization hopes that the video will remind audiences of the historical significance of this event, acting as a "cautionary tale," so that complacency and inaction will be replaced by vigilance and advocacy across a spectrum of issues relevant to public health.
Hemophilia Association of the Capital Area (HACA) (Fairfax, VA) $20,000
Men’s Retreat
Funding was provided for this first-time event plus three follow-up events. Many men with hemophilia in the Fairfax area also have hepatitis C or HIV, and have expressed a need to meet with others in their situation to discuss financial planning and health issues. The retreat would serve as a starting point for a support group for men with hemophilia and their spouses. The retreat is a weekend event that includes a discussion on financial planning, Medicaid/Medicare session, and a panel for hepatitis C.
Hemophilia Foundation of Maryland (HFM) (Baltimore, MD) $46,510
Youth Educational and Fitness Program Phase II – Toddler and Beyond
This funding enables HFM to expand their exercise program for children with bleeding disorders to include toddlers and small children. Funding provides support for activities including toddler swimming lessons, kids’ golf lessons, a bowling event, a bike riding event, and a 3-day seminar for families from Maryland. The seminar will enable parents and children to meet with physical therapists, personal trainers, and hematology professionals, and participate in a variety of fitness activities.
Hemophilia Association of San Diego County (San Diego, CA) $12,250
Tutoring Program for At-Risk Children with Hemophilia
This program helps children who cannot go to summer camp because they must make up the schoolwork they missed for health reasons. The program is in its second year. In the first year, all attendees made up their work and were able to attend camp. Funding supports two-hour weekly tutoring sessions with teachers who are board-certified and proficient in Spanish. It is open to 7-14 year olds with a bleeding disorder or sibling with a bleeding disorder.
Massachusetts General Hospital (Boston, MA) $194,260
The Role of Physiologic Blood Flow in the Accurate Diagnosis and Characterization of von Willebrand disease.
Investigators propose to study a novel method for diagnosing von Willebrand disease (VWD). The study will involve 80 adults and children with Type I VWD who will be tested for VWD using conventional methods as well as an experimental flow device that uses whole blood, arteriolar shear rates and shear stresses, and direct, real-time imaging of single platelets and platelet aggregates forming on injured and/or intact endothelial cell monolayers. Investigators hope to prove that VWD is a blood flow-related disorder, which should greatly evolve diagnostic methods.
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