Grant Recipients: First Half - 2007

Emory University School of Medicine (Atlanta, GA) $50,000
The Roles of Thrombin Activatable Fibrinolysis Inhibitor and Activated Factor XIII on Clot Stability in the Factor VIII-Deficient Plasma
Management of bleeding in patients with severe hemophilia who develop inhibitors is very difficult. Factor replacement therapy is quickly neutralized, resulting in soft-tissue and joint bleeds. Bypassing agents are used to achieve hemostasis but their effects are relatively short-lived, requiring repeated dosing. Funding will support a study to investigate whether factor XIII activation by thrombin plays a critical role in the stabilization of clots against fibrinolysis in the hope of determining optimal hemostatic agent(s) to prevent or better control bleeding in this patient population.

Rush University Medical Center (Chicago, IL) $98,827
The Role of Osteopontin as a Marker for Hemophilic Synovitis
Early diagnosis of joint disease can result in more aggressive treatment strategies to prevent destructive arthropathy. Development of a noninvasive relevant marker predictive of joint disease will be useful to identify patients at risk early in the course of the disease. Funding supports an analysis of the correlation between molecular changes in the plasma and synovial fluid of subjects with hemophilic synovitis and disease development to determine if osteopontin (OPN), an extracellular matrix protein, can serve as a potential marker for hemophilic synovitis. Investigators will attempt to determine if the level of OPN is reflective of the severity of the destructive changes in the articular cartilage and bone.

Western PA Chapter of NHF (Pittsburgh, PA) $10,000
Regional School Nurses Outreach Program Many girls and women with VWD go undiagnosed, with sometimes dire consequences including impaired quality of life, unnecessary hysterectomies, and lack of proper treatment for surgery, trauma, dental work, and childbirth. Funding supported a program to identify school-age girls by educating the school nurses who routinely see the girls due to bleeding symptoms. The program involved six educational dinners about VWD, which included a pre-test to determine the level of knowledge already in the public school system; a presentation about VWD; and a question and answer session.

Hemophilia and von Willebrand Education Network (HAVEN) (Erie, PA) $5,000
DonPaul Lucas Mentorship Program Funding supported this program, which matched adolescents and young adults ages 16-21 to serve as peer mentors with young adolescents ages 11-15. Mentors and mentees were given the resources necessary to guide them toward leadership roles in their local chapters, associations, bleeding disorders camps, and the national bleeding disorders organizations. Training of mentors involved an intensive weekend training program with ongoing support from adult advisors, along with attendance at two 1-day training sessions throughout the year.

Hemophilia of Georgia, Inc. (Atlanta, GA) $15,000
Youth Leadership Program There is a need to develop future leaders in the bleeding disorders community and to give young people with bleeding disorders the skills necessary for healthy and successful lives. Funding supported a program that targeted young clients, ages 13-21, to develop the skills and resources necessary to become a strong voice within the bleeding disorder community. Program involved educational sessions, workshops, and retreats to provide training in key leadership skills, and to encourage youth to become active role models in the bleeding disorder community and in the community at large.

Puget Sound Blood Center (Seattle, WA) $194,443
Modification of T-Cell Epitopes in Factor VIII The development of neutralizing antibodies (inhibitors) affects 25-35% of severe hemophilia A patients and is increasingly recognized as a risk in mild or moderately severe hemophilia A. This grant supported a study that looked at decreasing the incidence of inhibitors by modifying T-cell epitopes in factor VIII. Investigators hope results of the study will shed light on molecular mechanisms behind inhibitor development and hopefully lead eventually to development of less immunogenic versions of factor VIII.

Tennessee Hemophilia & Bleeding Disorders Foundation (Smyrna, TN) $15,442
Conquering the Rapids Adolescents with bleeding disorders face additional challenges in transitioning into adulthood, such as workplace discrimination and health-insurance concerns. This program aimed to increase the support network for consumers ages 18-25; enhance life skills; increase knowledge of health insurance rights and responsibilities, with emphasis on the importance of maintaining coverage; increase awareness of career planning and development; and improve knowledge of available resources, such as college scholarships and the State Hemophilia Program.

STITCHES Doll Project (Macomb, MI) $46,235
ClotNot Club Program
Many mental health professionals believe art therapy projects involving the creative process helps people reduce stress, increase self-esteem and self-awareness, and achieve insight. Funding provided support to the ClotNot Club, a new program of the STITCHES therapeutic doll-making program, which provided fabric doll forms to women living with bleeding disorders. Through doll-making workshops, participants will construct their own doll to make a personal statement about life with a bleeding disorder. Workshops will also include information about treatment and support resources for this population. Dolls will become part of a traveling educational exhibit to be shown at conferences, hospitals, and community centers, including the 2008 World Federation of Hemophilia meeting.

New England Hemophilia Association (Auburn, MA) $42,250
Red Flag New England Greater awareness of von Willebrand disease is crucial for the proper diagnosis and care of those who may be suffering. Funding supported further enhancement of the existing Red Flag New England, which has successfully educated nurses, doctors, dentists, and dental assistants about the signs and symptoms of VWD and the diagnostic and treatment resources available at the HTC. The goal is to prevent the serious, sometimes life-threatening complications that can result from an undiagnosed bleeding disorder.