Grant Recipients: Second Half – 2006

Hemophilia Foundation of Maryland (Baltimore, MD) $32,720
Youth Educational and Fitness Seminar
Support funded a three-day youth educational and fitness seminar for families from Maryland, Virginia, and Pennsylvania. Children met with physical therapists, personal trainers, and hematology professionals and helped to identify their own fitness needs, participate in a variety of fitness activities, and learn about healthy exercise. Parents also learned the importance of fitness in managing bleeding disorders and ways to incorporate exercise safely.

World Federation of Hemophilia (WFH) (Albany, NY) $10,000
Unrestricted Educational Grants In developing countries, most people with hemophilia remain untreated, suffering from crippling pain and disability. WFH relies solely on donations to carry out their work, which primarily involves distributing donated medicines to people in developing nations. Donated products are often used for life-saving treatment of children and newborns. Funding supported an effort to develop a website and print promotional materials to broaden awareness of the global hemophilia community in the US so that WFH can serve as a vital link between the hemophilia community in the US and around the world.

University of Miami Pediatrics (Miami, FL) $10,125
Primary Dental Project
Dental health is a major issue for people with bleeding disorders. With few treatment options, limited financial resources, and lack of dental coverage, patients in South Florida tend to have significant incidence of untreated dental disease. Funding supported a project to provide financial assistance to adult patients in immediate need of basic dental procedures; educate the bleeding disorder community about the importance of dental hygiene; and assure preventive/ongoing dental treatment for all patients with bleeding disorders.

Hemophilia Foundation of Illinois (Chicago, IL) $19,300
Hepatitis C Education Empowerment Symposia
Hepatitis C virus (HCV) is the most common cause of liver-related deaths. HCV affects the bleeding disorders community, with an estimated 44% of hemophilia patients and 5% of VWD patients having HCV. More education about management of HCV in the bleeding disorders community is needed. Funding supported a project to initiate an HCV education campaign involving a series of symposia held through Illinois. The program will discuss how effective treatment management can prevent life-threatening and/or serious health issues arising as a consequence of HCV.

Emory University, Aflac Cancer Center and Blood Disorders Services (Atlanta, GA) $200,000
Risk Factors for Inhibitor Development in Mild and Moderate Hemophilia
One of the most significant complications of hemophilia A is the formation of an inhibitor, making treatment extremely difficult. Most studies of inhibitors have involved patients with severe hemophilia A, and there is little knowledge about inhibitor formation in those with mild or moderate hemophilia A. Funding supported a study looking at persons with mild and moderate hemophilia A to estimate the risk of inhibitor formation associated with intensive factor VIII exposure in this patient population. The study also looked at risk of inhibitor formation associated with race, family history, and factor VIII genotype in these patients.

The Children’s Hospital of the King’s Daughters, Inc./Children’s Cancer and Blood Disorders Center (Norfolk, VA) $95,752
The Prevalence of Bleeding Disorders in Children Referred to Otolaryngology for Epistaxis A few studies have found a link between epistaxis (nose bleeds) and bleeding disorders in children, but such studies have recognized that patients with more severe epistaxis have a higher rate of identified bleeding disorders. For studies in patients referred to otolaryngology programs, limited hemostatic studies have been performed. Funding supported a prospective study to analyze children and adolescents referred to a large pediatric otolaryngology program for epistaxis by using a combination of a scored questionnaire, personal and family bleeding symptoms, and a battery of hemostatic tests. Aim of the study was to demonstrate to primary care physicians and otolaryngologists the value of performing hemostatic tests and getting a patient history in children with significant epistaxis.