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October 2022: Oregon Health & Science University, Portland, Oregon, “Best Practices in the Care and Management of People with PLAN,” in collaboration with INADcure Foundation and sister NBIA organizations, Associazione Italiana Sindromi Neurodegenerative Da Accumulo Di Ferro (Italy) and Hoffnungsbaum e.V. (Germany). $50,308.
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August, 2022: Oregon Health & Science University, Portland, Oregon, “BPANready: online collection of natural history and patient-reported outcome measures.” Years 4-5 of 5-year study. $103,292.
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July, 2021: Science Compass, Milan, Italy, “BPAN Landscape Analysis - The compilation of a scientific and medical landscape study in the field of Beta-Propeller Protein-Associated Neurodegeneration (BPAN). The aim of this study is to grasp the state of knowledge in the area of interest and to identify gaps and opportunities (Phase 1 Services). The organization and moderation of a Scientific and Medical Advisory Board (SMAB) meeting to identify strategic priorities and goals (Phase 2 Services), in collaboration with sister NBIA organizations AISNAF (Italy),Hoffnungsbaum e.V., (Germany), Stichting Ijzersterk. (Netherlands) and BPAN organizations BPAN Warriors (US), BPAN France, €43,920
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February, 2020: Science Compass, Milan, Italy, “MPAN Landscape Analysis - Comprehensive study of the MPAN medical and scientific landscape depicting the state of knowledge in the field as well as the gaps and opportunities, as well as preparation and management of a Scientific and Medical Advisory Board to discuss priority research questions and develop an opportunity roadmap,” in collaboration with sister NBIA organizations AISNAF (Italy),Hoffnungsbaum e.V., (Germany), €23,228
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March 2019: The Spoonbill Foundation, Portland, Oregon, Funding to support the design, development and management of an FDA CFR Part-11 compliant database for the CoA-Z clinical trial. $50,000.
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January 2017: International NBIA Patient Registry and Biobank, housed at Ludwig Munich University (Registry) and Technical University Munich (Biobank), Munich, Germany. Funding to support registry and biobank through December, 2018. NBIA Disorders Association as fiscal agent for the NBIA Alliance. $122,000.
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June 2015: International NBIA Patient Registry and Biobank, housed at Ludwig Munich University (Registry) and Technical University Munich (Biobank), Munich, Germany, 30,000 €/$35,000 to financially support these valuable resources for the NBIA community. Other NBIA Alliance member organizations are also financially supporting this effort for a total of $84,400 for an 18 month period.
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September, 2014: Oregon Health & Science University, Portland, OR. “Gene Therapy Mouse Phenotyping.” $119,993. Project started with the delivery of mice from OZgene Pty Ltd. in September, 2014. Final contract price $147,993.00 completed in March, 2017. Mice being kept for future use in cryopreservation storage at this time and available for re-derivation of lines by requesting investigators.
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March 2012: OZgene Pty Ltd, BentleyWA, Australia. “Gene Targeted heterozygous mice.” $52,415. Project completed in September, 2014 with the delivery of mice to OHSU in September, 2014.
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January 2012: Oregon Health & Science University, Portland, OR. “Best Practices in the Care and management of People with NBIA.” $16,116.67. Total cost $48,350.01. Partners in this project were AISNAF, the Italian NBIA organization and Hoffnungsbaum e.V., the German NBIA organization. Project completed in September, 2016 and published in March, 2017. ”
