Grant Recipients: First Half - 2006

Carol K. Kasper MD (Pasadena, CA) $15,000
Monograph on the Inheritance and Other Genetic Aspects of Hemophilia
There is currently no comprehensive publication on the inheritance and other genetic aspects of hemophilia. While the National Hemophilia Foundation has a basic publication on the topic, this grant supported a project to develop a 40-page publication to help illustrate challenging points about the role of genetics in hemophilia. Partial topics covered in the monograph include: basic information about DNA; types of mutations; association of type of mutation with characteristics of hemophilia and with vulnerability to inhibitors; and x-chromosome inactivation and its effect on factor levels in carriers.

Inalex Communications (Ridgewood, NJ) $34,815
Dialogues with Dad: Building Healthy Father-Son Relationships (Weekend Retreat)
Research shows that sons who feel emotionally connected with their fathers do better in school, are less likely to use drugs/alcohol or suffer from depression, and more likely to become healthy adults. There is a need for fathers and sons in the bleeding disorders community to strengthen their relationship with each other. Funding supported a Father and Son Weekend Retreat to help teach fathers and sons how to develop a supportive, emotionally connected, and trusting relationship.

UMDNJ Robert Wood Johnson Medical School (New Brunswick, NJ) $78,089
Protein Z Deficiency in Women with Placental Abruption
Funding supported a fellowship in hematology and oncology to investigate the relationship of protein Z deficiency and placental abruption. Study involved patients with documented placental abruption to investigate the presence of protein Z abnormalities. Other studies proposed that protein Z deficiency might lead to a bleeding tendency, but the role of protein Z deficiency and unexplained fetal loss has been controversial.

Hemophilia Foundation of Nevada (Henderson, NV) $70,197
Nevada Native American Hemophilia Education/Family Support
A large extended family of Native Americans have mild hemophilia and live in the Duck Valley Indian Reservation in Owyhee, Nevada. The area is extremely isolated and is more than 500 miles from the nearest hemophilia treatment center. This grant supported family and youth summer camps over a 2-year period. The goal was to improve the health of this geographically isolated and underserved bleeding disorder community.

Hemophilia Federation of America (Lafayette, LA) $22,280
HFA Focus on the Feminine
Funding supported a grant for the Focus on the Feminine program with a goal to educate, empower, and support female patients, caregivers, or family members whose life has been impacted by a bleeding disorder. The program mission was to be accomplished, by attending women’s information and health fairs around the country to exhibit and distribute educational material and educate women about bleeding disorders.

Utah Hemophilia Federation (Salt Lake City, UT) $14,000
Group Work Works!
People with bleeding disorders have added burdens of dealing with a lifelong chronic illness, financial strains, complications from their disorder, joint damage, etc. While many could benefit from psychosocial therapy, one-on-one sessions is often prohibitive in terms of time or money. This grant supported a project to make a social support group and one-on-one individual and family psychosocial services available to people in the bleeding disorders community. The project hoped to increase the number of people who can access group support, help deepen personal insight, change self-perceptions, bring more clarity, and aid participants to be more proactive in their lives.

Hemophilia of Iowa/First Steps (Central City, IA) $13,500
First Steps
Funding supported a grant to enhance the First Steps program. This program reaches out to families and parents with children ages birth to 7 years who have been newly diagnosed with bleeding disorders. The program includes mentorship training of parents of older children so they can provide support to parents of children birth through age 7. The program also offered retreats and family gatherings to enable mentors and families to connect with others.

Commonwealth Health Center Volunteer Association (Saipan, MP) $11,867
Saipan and Tinian are remote islands in the North Pacific region that have a very high incidence of bleeding disorders (approximately 12 in 20,000). The nearest treatment center is in Guam, 45 minutes away by airplane. Funding supported a project to educate providers on assessment and quality care of this population and included the creation of an assessment tool that can be used by small teams to identify multidisciplinary needs.

Penn Comprehensive Hemophilia and Thrombosis Program, University of Pennsylvania (Philadelphia, PA) $113,174
Pregnancy in Women With Type 1 von Willebrand Disease
Women are disproportionately affected with bleeding disorders in von Willebrand disease due to menorrhagia and postpartum hemorrhage (PPH). PPH is the leading cause of maternal mortality in the world. Funding supported a study to determine whether von Willebrand factor (VWF) levels, a history of menorrhagia, or prior PPH are predictors of PPH with subsequent pregnancies. The study evaluated VWF levels during pregnancy in patients with VWD and correlated levels with pregnancy outcomes and complications.