Utah Chapter National Hemophilia Foundation

“Upon submittal to the foundation's office manager, the office manager reviews and then submits the return to the president, executive committee, and director of the foundation for their review and approval.”

“The conflict of interest policy is consistently monitored and enforced through annual disclosures by officers and directors.”

“Information is available to public upon request.”

“Camp valor - for the children in utah's bleeding disorders community, camp valor represents the foundation for effective life-long management of a bleeding disorder. It is at this camp that children first learn to self- infuse; also, campers learn the basics of self advocacy, allowing them to prepare now to be informed partners with their health care providers in ensuring access to the continuum and quality of care required for the treatment and management of their disease state. Because of the severity of the condition from which they suffer, children with hemophilia seldom have the opportunity to enjoy many of the same physical activities that their unaffected peers do. Our camp, camp valor, allows children with bleeding disorders to spend time outdoors, recreating under the constant care and supervision of a full complement of medical professionals; for most of these children, it is the only time that they can just be kids.”

“Teen retreat and activities - at these events, adolescents with bleeding disorders are provided with the knowledge and skills that they require to assume increased responsibility for and greater independence in ensuring their access to the continuum and quality of care necessary for the life- long management of a bleeding disorder. These events also provide opportunities for teens to gain self- confidence and improve their self- esteem as they negotiate with a severe chronic condition, the sometimes challenging peer relationships and dynamics peculiar to adolescence. Individuals with bleeding disorders need to have a good job with good insurance. The scholarship fund was established to provide financial aid for college tuition so recipients could further their education and receive a good job to support them and provide for their bleeding disorder. The linking factor is a quarterly newsletter, which highlights foundation activities as well as provides a resource for further information on how to care for bleeding disorders. Newsletters are e-mailed to families and individuals with bleeding disorders throughout the state. First step activity - the first step activity is focused on addressing the needs of families with children who have recently been diagnosed with hemophilia or von willebrand disease. This event affords the parents of young children with bleeding disorders the opportunity to connect, network, support one another, and gain an increased understanding not only of the physiopathology of bleeding disorders but also the range of modalities and practices employed in the pediatric treatment and management of hemophilia and von willebrand disease. The mens health group is a monthly support group for men with hemophilia. Men, ages 18 and older, gather through common interest activities to learn more about caring for themselves as they age, as well as how to deal with emotional issues that come with having further complications related to their bleeding disorder. Families within the bleeding disorders community may need some extra financial assistance to support their family through the holiday season. Funds are used to buy food, clothing and toys for families determined to be most in need. The pep (parents empowering parents) program is a weekend conference for parents with young children, newly diagnosed with a bleeding disorder. Workshops are designed to address medical, developmental, social and emotional issues that may be unique to the family not familiar with how to treat their childs condition. The emergency assistance fund is a small fund for individuals with bleeding disorders to help with pay for utilities, rent or other needed items. Von willebrand disease (vwd) is the most common bleeding disorder, affecting as many as one in every 50 people. Although vwd can be treated it often goes undiagnosed which can cause severe complications. Vwd does share some commonalities with hemophilia but also poses many unique challenges to those that are affected by it. Education activities and support groups are held, specifically for individuals with vwd, to address these issues and provide answers. Girls night out is an outreach program to bring awareness to women about the signs & symptoms of the most common bleeding disorder, von willebrand disease (vwd). Statistics show that one in 50 women have vwd but, may not even know it. Girls night out invites women to shop at our boutique vendors, learn from interactive presentations, and receive health and wellness tips about vwd. The uhf adult retreat brings together the adult members of utah's bleeding disorders community for a weekend of peer support, networking, and education in various facets of the treatment and life-long management of bleeding disorders. The event affords both adults with bleeding disorders and the parents of children with bleeding disorders an opportunity to benefit from the practical knowledge and insights stemming from shared experience.”

“Book / tax depreciation difference -2,522”