The Lone Star Chapter of The

“The 990 is examined by the treasurer and governing board.”

“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, in addition to 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.”

“Other than executive director, officers are not compensated. Based on annual compensation, the organization does not have any employees meeting key employee standards.”

“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.”

“Mission and vision of the lone star bleeding disorders foundation (lsbdf): dedicated to improving the quality of life for south texans affected by rare bleeding disorders through education, advocacy efforts to ensure access to care, supporting research for better treatments and a cure, and raising public awareness. Based in houston and serving the communities of mcallen, corpus christi, san antonio, austin, and el paso, lsbdf's vision is to ensure that the needs of every south texan living with a bleeding disorder are met for successful management of the condition. The program service platform provides education, connections through peer based support groups, healthcare advocacy, and financial assistance for emergencies and educational scholarships. Form 990, part iii, line 4a, program service accomplishments: the texas bleeding disorders conference (tbdc) was a joint effort between lsbdf 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. Lsbdf provided camp sponsorships for campers at camp ailihpomeh, offering a unique experience where boys throughout texas met and built strong relationships with their peers affected by bleeding disorders. Camp ailihpomeh (hemophilia spelled backwards) began in the summer of 1979 as the first of its kind for children traditionally excluded from summer camp programs. Each summer, the camp serves hundreds of kids. In the spring and summer months, lsbdf hosted regional family education days where families affected by bleeding disorders were introduced to one another for networking and education. Industry partners also attended these events offering the latest information about health and services to the participants. Unite walks provided education and awareness opportunities. In 2008, lsbdf was proudly one of the first 5 inaugural sites of the national bleeding disorder foundation's hemophilia walk program. Starting locally in houston for the inaugural walk, lsbdf's unite walk events have expanded to multiple cities, hosting over 500 walkers each year. Lsbdf 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 2024, 5 scholarships were awarded to students attending oklahoma state university, southwestern university, texas a&m university, university of houston, and university of texas. Through outreach efforts in 2024, lsbdf welcomed newly diagnosed families with welcome bags and hosted english and spanish educational dinners that provided back to school tips for parents and students, best practices for school nurses and healthcare providers focused on patient diagnosis and treatment, and other educational materials. To reach specific segments of the bleeding disorders community, including men, women, teens, and families, retreats and winter holiday events were hosted in houston, the valley, and the hill country. Lsbdf advocated at the federal and state level on issues important to texas' bleeding disorders community, including participation in the national bleeding disorder foundation's annual washington days bringing patients and their families to washington dc to meet with lawmakers who shape national healthcare policy. Lsbdf pushed for awareness of rare diseases in connection with the national red tie campaign.”

“During 2024, the board of directors established an audit committee, comprised of the treasurer, president, and two persons not on the board, to assume responsibility for oversight of the audit of its financial statements and selection of the independent auditor. The audit committee reports to the full board of directors during the audit and at completion.”