2024-11-12T14:06:17-07:00 2023-12-31 990 2023-01-01 411661444 NATIONAL UREA CYCLE DISORDERS FOUNDATION NATI 6265780833 75 South Grand Avenue Pasadena CA 91105 Eva Oseland Secretary/Treasurer 6265780833 2024-11-12 1 2023 2024-10-15 13:58:12Z Eva Oseland 75 South Grand Avenue Pasadena CA 91105 518249 0 X nucdf.org X 1990 MN Save & improve lives of those affected by Urea Cycle Disorders, educating families & healthcare professionals on identification, diagnosis & treatment; stimulating & supporting research to improve quality of life and cure; increase awareness, info & support to all those affected by Urea Cycle Disorders. 5 3 2 4 0 0 96013 517831 0 0 360 418 0 0 96373 518249 0 0 0 0 106936 84952 0 0 1370 87603 108429 194539 193381 -98166 324868 821328 1162732 0 16536 821328 1146196 To save the lives & improve outcomes of individuals with urea cycle disorders (rare genetic inborn error of metabolism) by 1) driving & supporting critical research, 2) educating healthcare professionals on identification, diagnosis & treatment, 3)providing education information, resources & support to affected families & connecting those affected with support, 4) increasing publics awareness so no child or adult suffers or dies undiagnosed, 5) educating policy makers on the needs of affected individuals and families. 0 0 84653 0 0 Research,Science/Medicine Programs:1)NUCDF Fellowship Award attracts/supports new investigators in the field of urea cycle disorder research & clinical care; goal is to accelerate research & improve access to quality care. 2) Founding partner NIH Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium. Research projects include natural history & neuroimaging studies, clinical trials for new treatments. NUCDF exec director serves as Consortium Co-Principal Investigator in key leadership role directly stimulating & developing research projects/protocols, engaging patient community, communicating research activities & progress to patient community & reducing barriers to patient participation in research. 3) Accelerates/supports international research, increases understanding of disorders/effects on brain function. Facilitates development/enrollment of clinical trials for new treatments/devices & validation of next-generation diagnostic and screening technologies. Strategic development & funding of neuroscience collaborations to accelerate research on effects of UCD on brain function & long-term health, development of treatments/interventions to prevent brain damage & improve cognitive function. 4) IRB-approved International UCD Patient-Reported Registry collects natural history/outcome data to accelerate research & understand QOL issues, identify unmet patient needs/issues for research. 5) CureUCD eclinical Therapeutic Discovery Lab: model project to validate potential treatments & accelerate development of clinical trials. 67722 0 0 Advocacy, Education & Awareness Programs 1) Advocacy partnerships, policy & programs to benefit UCD patient community & rare disease community at large. 2) NUCDF websites serve as vital portals & lifelines to provide credible information & educational resources to healthcare professionals, affected families/patients & public, facilitate communication & support mechanisms. Programs facilitate identification, diagnosis/treatment for over 200 new families/yr. 3) Multiple portals facilitate e-communications & support network for over 2000 healthcare professionals & affected families in over 40 countries. 4) Patient & medical professional education programs include webcasts/webinars, Annual Family Conference, international scientific symposia, speakers bureau, Grand Rounds & symposium presentations, educational seminars for medical professionals, CheckAmmonia.com education website for healthcare professionals. 5) Awareness activities include annual events (Rare Disease Day, Cure the Cycle Challenge), educational booths at medical society conferences, targeted media to increase identification of undiagnosed patients, educate/inform public & med professionals about prevalence, early identification, risks, etc. 6) Publications, educational materials, guides, resource library, research & news briefs available in wide variety of formats through website, listserv, online community, exhibits and other rare disease community. 16931 0 0 NUCDF Patient and Family Support Programs 1) Serve as lifelines to families & affected individuals worldwide in need of information peer-to-peer support to families and patients struggling with new diagnosis, facing medical crises, or in need of resources or emotional support. Connects affected families together for support. Actively serves over 1300 families and medical professionals. 2) Maintains moderated private online support community with groups, discussions, educational/informational videos, forums, blogs. 3) NUCDF Family Conference, local "meet-ups" & networking activities connect families for support and provide credible information to improve outcomes. Connects affected patients & families with world-renowed medical experts, latest research/treatment information not available anywhere else. Conference provides opportunities for patients and families to participate in research studies conducted at conference. 4) Online meetings/webcasts/webinars provide information to increase understanding of the disorder, treatment and management, and educate community about research activities. 0 0 0 169306 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 4 0 1 2 1 0 0 0 0 0 0 0 0 X 5 3 0 0 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 CA X X E Oseland 6265780833 75 South Grand Avenue Pasadena CA 91105 Tresa Warner President 30 0 X X 45000 0 0 Eva Oseland Secretary/Treasurer 25 0 X X 6319 0 0 Amanda Sonntag Board Member 1 0 X 0 0 0 Lori Shockey Board Member 1 0 X 0 0 0 Mary Alice O'Malley Board Member 1 0 X 0 0 0 51319 0 0 0 0 0 0 0 2812 0 0 0 0 515019 0 517831 0 418 0 0 418 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 518249 0 0 418 X 78915 72165 5850 900 6037 5521 447 69 781 781 10613 10613 17911 14582 3129 200 8309 7731 576 2 10631 10527 104 21063 21063 2817 2817 3844 3252 592 License and Permits 1093 939 154 Bank Charges and Fees 901 585 221 95 Development and Education 19826 19826 0 0 Telephone 10640 10298 342 193381 169306 22705 1370 180185 255837 641143 641560 250000 15335 821328 1162732 16536 0 16536 X 821328 896196 0 250000 821328 1146196 821328 1162732 324868 0 0 0 0 0 X X 1 X 0 0 0 X 81556 59739 49099 56534 17831 264759 81556 59739 49099 56534 17831 264759 51921 212838 1317 2203 1497 360 418 5795 270554 1812 0.78667 0.78262 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Form 990, Part VI, Section B, Line 11b Form 990 emailed to Board of Directors prior to filing. Directors have the opportunity to request clarification or explanation from the Executive Director and/or Financial Officer. Form 990, Part VI, Section B, Line 12c Board of Directors and employees must complete a Conflict of Interest Declaration stating they had no declarer certifies they are required to scrutinize their transactions, outside business interest and relationships for potential conflicts on an ongoing basis and immediately report any such conflicts. In the event of such disclosure, the Board of Directors shall determine whether a conflict exists and in the case of existing conflict, determine whether or not such stated transaction may be authorized as reasonable by NUCDF Form 990, Part VI, Section B, Line 15 The executive committee as appropriate reviews comparable salaries from similar organizations and from recognized nonprofit compensation studies to determine appropriate salary ranges for executive director and key employees and report their findings with substantiation to the Board of Directors, along with any performance review of the Executive Director and/or new salary or benefits package proposals to be voted on. The process is recorded in the minutes of the Board of Directors. Form 990, Part VI, Section C, Line 19 The Foundation makes it's conflict of interest policy, governing documents and financial statements available upon request. Form 990, Part IX, Line 11g Contracted Services for Virtual Assistant, Nurse Coordinator, Charity Registration Compliance Service Form 990, Part XII, Line 1 Accrual Method used to comply with GAAP Form 8868 Application of Automatic Extension was granted until November 15, 2024