Lone Star Chapter of the National Hemophilia Foundation

“The 990 is examined by the treasurer.”

“Disclosures are asked for at the beginning of every board meeting. Any conflict of interest results in immediate loss of voting privileges.”

“Each year, a special compensation committee comprised of community members and board of directors independent of the executive director(ed) reviews and establishes compensation and critical qualifications for the ed position, plus benefit packages for other employees. The committee reviews the current compensation package against those of ogranizations of similar size and operating in the same territorial jurisdiction. The committee's deliberations are included with executive session minutes and require majority vote for approval.”

“The governing documents and financial statements are available to the public upon request at the address at which the books and records of the organization are kept.”

“Form 990, part iii, line 1, the organization's mission: the lone star bleeding disorders foundation (lone star bdf) is dedicated to the treatment and the cure of inherited bleeding disorders, complications of those disorders and their treatments, as well as to improving the quality of life for all those affected through the promotion and support of research, advocacy, education, and other services. Form 990, part iii, line 4a, program service accomplishments: the texas bleeding disorders conference (tbdc) was a joint effort between lone star bdf and texas central bleeding disorders bringing nearly 1000 people from all over the state of texas together for a weekend of education, networking, and fun. Activities were planned for the whole family, childcare was provided, and spanish accomodations were made for bilingual participants. Sessions were offered to make every step of life with a bleeding disorder better. Lone star bdf provided camp sponsorships for campers at camp ailihpomeh, a place where boys throughout texas meet and build strong relationships with other boys with bleeding disorders. Camp ailihpomeh (hemophilia spelled backwards) began in the summer of 1979 as the first camp for children traditionally excluded from summer camp programs. Each summer, the camp serves hundreds of kids. In the spring and summer, lone star bdf hosted regional family education days where families affected by bleeding disorders were acquainted and learned from one another, and met industry partners offering the latest information about health and services. Unite walks provided education and awareness opportunities. Lone star bdf was one of the first 5 inaugural sites of the national hemophilia foundation's hemophilia walk program in 2008. It started in houston, and has grown to multiple walks, hosting over 5,000 walkers. Lone star bdf supported young adults directly affected with an inherited bleeding disorder, or an immediate family member of someone with a bleeding disorder, pursuing post-high school education with academic scholarships. In 2023, 4 scholarships were awarded to students attending tarleton state university, university of houston, university of texas, and texas a&m university. Lone star bdf welcomed newly diagnosed families with welcome bags and hosted dinners and education events throughout 2023, ranging from parents' back to school tips for students with bleeding disorders, spanish educational dinners, retreats for men/women/teens, and winter family events in houston, the valley, and the hill country for patients to meet for fun, holiday cheer, crafts, and the chapter's update. Lone star bdf advocated at the federal and state level on issues important to texas' bleeding disorders community, including participation in the national hemophilia foundation's annual washington days bringing patients and their families to washington dc to meet with lawmakers who shape national healthcare policy. Lone star bdf pushed for awareness of rare diseases in connection with the national red tie campaign.”

“Helping hands aid 15,957 0 0 printing and postage 15,530 0 0 direct supplies 14,533 0 0 translation services 10,315 0 0 exhibit fees 7,118 0 0 telephone 1,411 1,411 1,882 storage fees 0 2,381 0 payroll proc fees 0 2,339 0 credit card & bank fees 194 1,605 0 other 1,718 0 0 speakers at events 1,250 0 0 training and education 950 0 0 dues and subscriptions 575 0 0 total 69,551 7,736 1,882”