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Patient Grants
Florida Hemophilia Association (FHA) (Palmetto Bay, Fla.) $7,425
“Lighten Up!” Program – With obesity an issue facing many Americans, including those with hemophilia, the Florida Hemophilia Association has partnered with the Culinary Institute of Fort Lauderdale and the University of Miami Hemophilia Treatment Center to develop a program aimed at healthful meal preparation. This grant will support the “Lighten Up!” program as it strives to educate patients and their families that a healthy weight can lead to healthier joints and fewer bleeds, while teaching caretakers the steps to preparing lighter versions of family favorites without spending additional money.
Hemophilia Foundation of Illinois (HFI)(Chicago, Ill.) $21,000
A Joint Venture to Explore the Needs of the Illinois Hispanic Bleeding Disorder Population – The Hispanic population in the United States continues to grow significantly and it is estimated that nearly 15 percent of the Illinois population (as of July 2006) is Hispanic. This grant will fund a project consisting of focus groups designed to determine the scope of issues and concerns within the Latino and Hispanic bleeding disorders communities so that members of those communities may gain access to the resources available that will help them in managing their condition.
Hemophilia Foundation of Minnesota/Dakotas (HFMD) (Mendota Heights, Minn.) $5,000 Multi-cultural Outreach Project – Many bleeding disorder patients and their families living in the Twin Cities metro area encounter language barriers that may inhibit them from attending HFMD meetings where they can network and learn about their health or that of a loved one. This grant will enable HFMD to promote a workshop designed specifically for multicultural families, with the goal of helping patients and their families treat hemophilia effectively on a daily basis. The educational workshops will feature presenters from Hemophilia Treatment Centers of the University of Minnesota Medical Center/Fairview, HFMD and Children’s Hospitals and Clinics of Minneapolis and St. Paul.
Hemophilia of North Carolina
(Morrisville, N.C.) $28,130
Women’s Retreat – A patient grant will allow the organization to fund an educational retreat for women and their teenage daughters who are affected by a bleeding disorder such as von Willebrand Disease. The retreat will feature experts in the field of treatment, genetics, advocacy and resources. The organization’s goal is to serve as a model program and eventually to make the retreat an annual event.
The University of Colorado Denver – Hemophilia and Thrombosis Center’s Region VIII and Region X Nursing Group(Aurora, Colo.) $7,458
Mild Hemophilia Brochure Publication – During a bi-regional meeting, the organization’s nursing group identified the need for a brochure that could be given to patients with mild hemophilia. This grant will allow the organization to develop the brochure and disseminate the information on mild hemophilia to newly diagnosed persons and their care providers.
Research Grants
Rush University Medical Center (Chicago, Ill.) $199,709
Therapeutic Possibilities of Osteopontin in Hemophilia Arthropathy – The joints of the arms and legs are the most common sites of serious bleeding in patients with severe hemophilia. While joint disease can negatively impact physical functioning and can be expensive to treat, this is an area of research that has received little attention. This grant will fund a study that explores the diagnostic and therapeutic opportunities related to osteopontin in hemophilic arthropathy.
Rush University Medical Center
(Chicago, Ill.) $75,572Vitamin D Insufficiency and Osteoporosis in Young Boys with Hemophilia – People living with hemophilia often have reduced bone mineral density (BMD). Studies suggest that decreased mobility secondary to arthropathy is the primary cause of low BMD in adults. However, the relationship between BMD and Vitamin D status among hemophiliac children has not been adequately investigated. This study strives to determine whether there is a significant association between the degree of osteopenia or osteoporosis and the degree of Vitamin D insufficiency or deficiency in young boys with hemophilia.
University of North Carolina at Chapel Hill (Chapel Hill, N.C.) (Chapel Hill, N.C.) $190,300
An Observational Study of Postoperative Deep Venous Thrombosis (DTV) in Hemophiliacs Undergoing Major Orthopedic Surgery – Currently, a need exists for hemophilia treatment guidelines that address the magnitude of the risk of venous thromboembolism for hemophiliacs undergoing major orthopedic surgery. Because this is a high risk surgery and hemophilia patients are typically on factor replacement therapy, the issue of need for thromboprophylaxis is a critical one. This study will aid in the development of evidence based guidelines for thromboprophylaxis in hemophilia patients undergoing major orthopedic surgery. |