Grant Recipients: Second Half - 2007

World Federation of Hemophilia (WFH) USA
(Montreal, Canada) $30,000
Treatment for All: Public Awareness and Education Project WFH builds awareness and support for the need to improve treatment for all people with bleeding disorders, all over the world. In the developing world, the majority of children and adults with hemophilia remain untreated. The infusion of even small amounts of safe blood treatment products will significantly boost life prospects. Funding supports awareness-building and education efforts by producing a series of promotional materials to inspire families with hemophilia throughout the US to get involved in this worthy cause. Project also involves promoting current American volunteers who are already making a difference in developing countries in order to raise awareness.

Comprehensive Hemophilia Treatment Center (HTC) (Newark, NJ) $17,050
Reach for the Stars The HTC emphasizes participation in appropriate exercise and activities to maintain healthy joints. The HTC takes an active role in encouraging attendance at annual evaluations, participation in exercise programs, good nutrition, and learning about their diagnosis and treatment, yet many families are not following recommendations. Funding supports a program to provide the building blocks for healthy living. The program educates children and their families about the importance of caring for themselves, while addressing the barriers to following recommendations. Children participate in fitness, nutrition, and educational games while scoring points for their participation. An awards banquet will take place at the conclusion of the program.

Carol K. Kasper, MD (Pasadena, CA) $15,000
Genetics of Hemophilia A and B
The NHF and the WFH expressed a need for an in-depth monograph on the genetics of hemophilia A and B. The monograph is 58 pages with 50 color illustrations, an appendix of laboratories doing full-gene analysis and of major laboratories involved in pre-implantation genetic diagnosis, and a glossary of genetic terms. Funding will support printing and distribution of a second edition to be provided to NHF, WHF, and other organizations.

University of North Carolina at Chapel Hill (Chapel Hill, NC) $114,336
Sensitive Biomarkers of Progressive Liver Disease in Hemophilia Patients with Chronic Hepatitis C
Liver biopsy to determine level of hepatic inflammation, necrosis, and fibrosis is not practical in a hemophilia population. There is a need for accurate, noninvasive markers for assessing and prospectively monitoring liver disease in this population so that appropriate treatment can be administered. Funding will support the study of stored plasma samples collected from patients with hemophilia and hepatitis C in order to identify biomarkers that correlate with the extent of hepatic injury. Investigators will pursue the hypothesis that modifications to proteins primarily synthesized in the liver will reflect the extent of liver injury and fibrosis and that these modifications can be used as sensitive biomarkers of progressive liver disease.

United Virginia Chapter of NHF (UVC-NHF) (Midlothian, VA) $10,000
Unrestricted Educational Grant
UVC-NHF represents the bleeding disorder community for most of Virginia and is dedicated to serving the needs of this community through education, advocacy, and the support of research to find a cure. Funding was given to support the hiring of a consultant to create a comprehensive database of members and donors to target mailings, plan events and fundraisers, and increase program offerings; to purchase an LCD projector to increase/improve educational offerings; create a display board; to update fundraising flyers and chapter brochure; and website enhancements.