
Terms and Conditions
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Rare Birds Foundation Research Grant Terms And Conditions
Version 1.1
These Terms and Conditions (“Terms”) govern any research grant (“Grant”) awarded by Rare Birds Foundation (“Foundation”) to an eligible scientific, medical, academic, nonprofit, or other research institution (“Grantee”) for research relating to ADSL Deficiency.
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The Grant is solely intended to advance charitable scientific and medical research consistent with the Foundation’s mission and shall be administered in accordance with applicable federal, state, and local laws and regulations.
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1. Award and Grant Agreement
The Foundation’s award letter, approved project proposal, budget, these Terms, and any additional written conditions issued by the Foundation constitute the Grant Agreement (“Agreement”).
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The Agreement becomes effective only when executed by authorized representatives of both the Foundation and Grantee.
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The Grantee may not materially modify the approved research project, budget, Principal Investigator, project period, or use of Grant funds without the Foundation’s prior written approval.
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2. Charitable Purpose
Grant funds shall be used exclusively for the charitable and scientific purposes described in the approved proposal.
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The Grant is intended to support research that may contribute to the understanding, prevention, treatment, or eventual cure of ADSL Deficiency.
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Grant funds shall not be used for:
· Personal expenses of the Principal Investigator or research personnel;
· Political campaign activity;
· Lobbying or other activities prohibited for charitable organizations;
· Activities unrelated to the approved research;
· Illegal activities;
· Payments intended to improperly influence government officials or other persons;
· Personal benefit unrelated to the charitable purpose of the Grant; or
· Any purpose inconsistent with the Foundation’s tax-exempt charitable status.
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3. Grant Period of Performance
The Grant shall begin and end on the dates specified in the award letter.
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Grant funds must be used during the approved Grant period unless the Foundation provides written approval for an extension.
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Any unspent funds remaining at the end of the Grant period shall be returned to the Foundation unless otherwise approved in writing.
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4. Payment of Grant Funds
Grant funds shall be disbursed in installments as specified in the award letter.
Disbursement of any installment is conditioned upon the Grantee being in material compliance with the Agreement, including submission of all required reports then due and maintenance of any regulatory approvals required for the funded research.
The Foundation may adjust the disbursement schedule by written agreement with the Grantee, including to align payments with scientific milestones identified in the approved proposal.
Payment shall be made to the Grantee institution and not to the Principal Investigator individually. The Grantee shall provide payment instructions and a completed IRS (Internal Revenue Service) Form W-9 before the initial disbursement.
The Foundation’s total financial obligation under the Agreement shall not exceed the award amount stated in the award letter. The Foundation shall have no obligation to provide funding beyond that amount, and nothing in the Agreement obligates the Foundation to renew, extend, or provide additional funding.
5. Use of Grant Funds
Grant funds may be used only for expenses included in the approved budget. If changes to the approved budget are required, a budget modification request must be submitted to the Foundation, and all modifications must be approved in writing by the Foundation.
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Permitted expenses may include:
· Research personnel;
· Laboratory supplies and reagents;
· Patient-derived cells or biological materials;
· Animal model research;
· Core laboratory and specialized testing services;
· Data collection and analysis;
· Research equipment directly necessary for the approved project;
· Publication and dissemination expenses;
· Other direct research expenses specifically approved by the Foundation.
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Grant funds may not be used to supplant funding already committed to the same expenses unless expressly approved by the Foundation.
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6. Indirect Costs
Indirect or facilities-and-administrative costs (“Indirect Costs”) shall not exceed 10% of the direct costs, unless the Foundation expressly approves a different amount in writing before the Grant is awarded.
Any Indirect Costs must be clearly identified in the Grant budget.
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The Grantee shall not reclassify direct research expenses as Indirect Costs for the purpose of circumventing this limitation.
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7. Financial Management
The Grantee shall maintain Grant funds and financial records in accordance with generally accepted accounting principles and applicable institutional policies and laws.
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Grant funds must be accounted for separately or in a manner that permits the Grantee to identify and document all expenditures attributable to the Grant.
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The Grantee shall maintain adequate documentation, including invoices, payroll records, receipts, contracts, and other supporting records demonstrating the proper use of Grant funds.
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8. No Private Benefit
The Grant shall be administered exclusively for charitable and scientific purposes.
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The Grantee shall not use Grant funds to provide an impermissible private benefit or private inurement to any individual, investigator, director, officer, employee, donor, or other private party.
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Compensation paid from Grant funds must be reasonable and directly related to the approved research.
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9. Conflicts of Interest
The Grantee shall maintain and follow appropriate conflict-of-interest policies applicable to the research and administration of the Grant.
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The Grantee shall promptly disclose to the Foundation any actual or potential conflict of interest that could reasonably affect the integrity, objectivity, financial administration, or scientific conduct of the funded project.
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The Foundation may require additional disclosure, review, recusal, or corrective measures when appropriate.
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The Foundation will likewise administer its grantmaking process in accordance with its own conflict-of-interest policies and applicable law.
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California law imposes specific restrictions on self-dealing transactions involving nonprofit public-benefit corporations and interested directors.
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10. Scientific Independence
The Foundation recognizes the scientific independence of the Grantee and Principal Investigator.
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The Foundation shall not direct or control the scientific conclusions of the research.
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The Grantee shall be responsible for the scientific design, conduct, analysis, interpretation, and integrity of the research, subject to the approved Grant scope.
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The Foundation may review progress and compliance with the Agreement but shall not require a particular scientific outcome as a condition of funding.
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11. Scientific Integrity
The Grantee shall conduct the research in accordance with accepted scientific standards and applicable institutional, federal, state, and local requirements.
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The Grantee shall promptly notify the Foundation of any material event that may substantially affect the integrity, safety, feasibility, or continuation of the project, including:
· Significant adverse findings;
· Material scientific misconduct;
· Loss or suspension of required regulatory approvals;
· Significant deviations from the approved protocol;
· Inability to achieve material project milestones;
· Material budget changes; or
· Circumstances that could reasonably result in termination of the project.
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12. Human Subjects Research
Any research involving human subjects, identifiable human biological specimens, identifiable health information, or other human participant research shall comply with all applicable federal, state, and local laws and regulations and the policies of the Grantee’s institution.
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Where applicable, the Grantee shall obtain and maintain approval from an Institutional Review Board (“IRB”) or other legally required oversight body before beginning the applicable research.
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The Grantee is solely responsible for determining whether proposed activities constitute human subjects research and for obtaining all required approvals.
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California law establishes specific protections for human subjects participating in medical experimentation, including statutory requirements concerning an experimental subject’s rights.
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No Grant funds may be used for human-subject research that lacks legally required approval.
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13. Animal Research
Any research involving animals shall comply with all applicable federal, state, and local laws, regulations, institutional policies, and applicable animal welfare requirements.
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Where required, the Grantee shall obtain and maintain approval from its Institutional Animal Care and Use Committee (“IACUC”) or equivalent oversight body before beginning animal research.
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The Foundation may request documentation demonstrating appropriate regulatory and institutional approval.
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14. Biosafety and Laboratory Compliance
The Grantee shall comply with all applicable requirements relating to biosafety, hazardous materials, biological specimens, genetically modified organisms, laboratory safety, and environmental protection.
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The Grantee shall obtain all permits, licenses, approvals, and institutional authorizations required to conduct the research.
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15. Patient Privacy and Confidential Information
The Grantee shall protect confidential and personally identifiable information obtained or used in connection with the research.
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Where applicable, the Grantee shall comply with the Health Insurance Portability and Accountability Act (HIPAA) and other applicable state privacy and data-protection laws.
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The Grantee shall use reasonable administrative, technical, and physical safeguards to protect confidential information.
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California privacy law imposes requirements concerning the collection, use, retention, disclosure, and security of personal information in circumstances covered by the applicable statutes.
16. Confidentiality
In the course of the Grant, either party may disclose to the other information that is not publicly available, including unpublished research data, methods, preliminary results, invention disclosures, business or financial information, and donor information (“Confidential Information”).
Information is Confidential Information if it is marked or otherwise identified in writing as confidential at the time of disclosure, or if disclosed orally or visually, is identified as confidential at the time and confirmed in writing within thirty (30) days. Information contained in progress reports, final reports, and financial reports submitted to the Foundation shall be treated as Confidential Information whether or not marked, unless the Grantee indicates otherwise in writing.
Each party shall use Confidential Information of the other party only for purposes of the Grant and shall not disclose it to third parties, except to its directors, officers, employees, agents, and professional advisors who have a need to know and are bound by obligations of confidentiality no less protective than these Terms. Each party shall protect the other’s Confidential Information using at least the same degree of care it uses for its own information of similar sensitivity, and in no event less than reasonable care.
These obligations do not apply to information that: (a) is or becomes publicly available through no breach of the Agreement; (b) was known to the receiving party without obligation of confidentiality before disclosure; (c) is rightfully received from a third party without restriction; or (d) is independently developed without use of the disclosing party’s Confidential Information.
Either party may disclose Confidential Information to the extent required by law, court order, or the lawful requirements of a governmental authority, including any public records or freedom of information law applicable to a governmental or public institution. The disclosing party shall, where legally permitted, provide reasonable advance notice so the other party may seek protective treatment.
The Foundation may disclose the Grantee’s name, the Principal Investigator’s name, the project title, the award amount, general research objectives, and information the Grantee has approved for release, notwithstanding this section. The Foundation may also make disclosures required by the Internal Revenue Service (IRS) or other regulators, including reporting on IRS Form 990.
Confidentiality obligations shall survive for five (5) years following the end of the Grant period.
17. Intellectual Property
The Grantee shall retain ownership of intellectual property developed through the research, subject to any rights expressly provided to the Foundation in the Grant Agreement and any applicable law.
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The Foundation does not obtain ownership of inventions, patents, copyrights, data, discoveries, or other intellectual property solely by providing Grant funding unless expressly agreed in writing.
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The Grantee shall promptly notify the Foundation of significant discoveries or inventions arising directly from the funded project when such disclosure is permitted and does not compromise intellectual-property protection.
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The parties may enter into a separate intellectual-property agreement if appropriate for a particular project.
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18. Publication and Scientific Disclosure
The Foundation supports publication and dissemination of legitimate scientific findings.
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The Grantee retains the right to publish scientific results arising from the research, subject to reasonable protection of confidential information and intellectual property.
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The Foundation may request reasonable advance notice of publications, presentations, press releases, or other public announcements concerning the funded research.
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The Foundation shall not unreasonably restrict publication of scientifically valid findings.
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19. Acknowledgment of Foundation Support
Publications, presentations, posters, abstracts, and other public materials resulting from the funded research should acknowledge support from Rare Birds Foundation using substantially the following language:
“This research was supported in whole or in part by a grant from Rare Birds Foundation.”
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Use of the Foundation’s name, logo, trademarks, or other branding materials requires prior written permission.
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20. Plain-Language Research Updates
Because Rare Birds Foundation represents individuals and families directly affected by ADSL Deficiency, the Grantee agrees to make reasonable efforts to provide periodic plain-language summaries of significant research progress.
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These summaries should explain:
· What the researchers are studying;
· What has been learned;
· What the findings may mean;
· What remains unknown; and
· What the next steps are.
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The Foundation may use approved summaries to communicate research progress to patients, families, donors, and the public.
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No confidential, proprietary, or personally identifiable information shall be disclosed without appropriate authorization.
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21. Research Milestones
The Grant Agreement may establish specific scientific and administrative milestones.
Milestones may include:
· Completion of defined experiments;
· Generation of preliminary efficacy data;
· Completion of safety studies;
· Demonstration of target engagement;
· Development or validation of a research model;
· Submission of a subsequent grant application;
· Completion of a defined preclinical stage; or
· Other measurable objectives identified in the approved proposal.
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Milestones are intended to provide accountability and assess progress. Failure to achieve a scientific hypothesis or expected result shall not, by itself, constitute a breach of the Agreement when the research was conducted appropriately and in good faith.
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22. Progress Reports
The Grantee shall provide progress reports at intervals specified in the award letter.
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Reports shall describe:
· Work completed;
· Results obtained;
· Progress toward milestones;
· Problems or delays;
· Changes in personnel;
· Changes in the research plan;
· Expenditures to date; and
· Planned next steps.
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The Foundation may request reasonable additional information concerning the Grant.
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23. Final Report
Within the period specified by the Foundation following completion or termination of the Grant, the Grantee shall submit a final report summarizing:
· Research conducted;
· Major findings;
· Milestones achieved;
· Scientific significance;
· Potential therapeutic implications;
· Future research needs;
· Publications or presentations resulting from the project; and
· Final disposition of Grant funds.
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24. Financial Reporting
The Foundation requires a final financial report showing how Grant funds were spent.
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If Grant funds were not fully expended for the approved charitable purpose, the Grantee shall return the remaining balance to the Foundation unless the Foundation approves another disposition in writing.
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The Foundation may require repayment of funds that were materially misused or spent outside the approved purpose.
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25. Records and Audit Rights
The Grantee shall maintain complete records relating to the Grant for at least seven (7) years following the end of the Grant period, or longer if required by applicable law or institutional policy.
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Upon reasonable notice, the Foundation may request access to records reasonably necessary to verify compliance with the Agreement.
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The Foundation's review rights shall be exercised in a manner that respects patient confidentiality, proprietary information, academic privileges, and applicable law.
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26. Collaborative Research, Subawards and Subcontractors
The Foundation recognizes that some research projects may be conducted collaboratively by multiple institutions or research organizations. Collaborating institutions identified in the approved proposal may participate in the funded research without requiring additional approval, provided their roles and responsibilities are clearly described in the approved proposal and budget.
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The Grantee may not add a new collaborating institution or transfer or subcontract a substantial portion of the funded research to another institution without the Foundation’s prior written approval.
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Any approved subaward or subcontract must:
· Be consistent with the approved research;
· Be documented in writing;
· Clearly define the collaborating institution’s scope of work and responsibilities;
· Require appropriate oversight by the Grantee; and
· Require compliance with applicable provisions of these Terms.
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The Grantee remains responsible for the proper use of Grant funds, appropriate oversight of collaborating institutions and subcontractors, and overall performance of the approved project.
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27. Additional Funding
The Grantee shall disclose material funding received from other sources for the same research project when requested by the Foundation.
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The Foundation encourages leveraging Grant funds to obtain additional governmental, philanthropic, institutional, or industry support.
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Receipt of additional funding does not automatically reduce the Foundation's Grant unless the additional funding creates a duplication of costs or materially changes the approved project.
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28. Regulatory Compliance
The Grantee represents that it will comply with all applicable federal, state, and local laws and regulations in conducting the funded research.
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Depending upon the project, these may include requirements relating to:
· Human subjects;
· Animal research;
· Biosafety;
· Genetic materials;
· Controlled substances;
· Environmental health and safety;
· Privacy and data protection;
· Export controls and sanctions;
· Intellectual property;
· Research misconduct;
· Financial management; and
· Institutional research compliance.
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The Grantee is responsible for determining which requirements apply to its activities.
29. Research Misconduct
The Grantee shall maintain procedures for addressing allegations of research misconduct.
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If the Grantee determines that credible allegations of research misconduct materially affect the funded research, the Grantee shall notify the Foundation when legally permitted and appropriate.
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The Foundation may suspend funding while an investigation is pending if necessary to protect charitable assets or the integrity of the research.
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30. Nondiscrimination
The Grantee shall comply with applicable federal, state, and local nondiscrimination laws in administering the Grant and conducting the funded activities.
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Nothing in this Agreement shall require the Grantee to violate applicable law or its lawful institutional policies.
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31. Political and Lobbying Activities
Grant funds may not be used for political campaign intervention or for lobbying activities prohibited by applicable federal tax law.
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The Grantee shall maintain appropriate accounting controls to ensure that Grant funds are not used for prohibited purposes.
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32. No Guarantee of Treatment
The Foundation does not represent or warrant that research funded through the Grant will result in an effective treatment, cure, clinical trial, regulatory approval, or other particular scientific outcome.
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Research is inherently uncertain, and the Foundation recognizes that scientifically valid research may produce negative or inconclusive results.
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33. No Medical Advice
The Grant does not constitute medical advice, treatment, or a recommendation concerning the use of any experimental therapy.
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The Foundation shall not be responsible for clinical decisions made by researchers, physicians, institutions, patients, or families.
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34. Publicity
The Grantee shall not imply that the Foundation endorses a specific commercial product, therapy, investigator, institution, or company without the Foundation’s prior written consent.
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The Foundation may publicly identify the Grantee, Principal Investigator, project title, award amount, general research objectives, and non-confidential research results.
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35. Insurance and Institutional Responsibility
The Grantee shall maintain insurance and institutional protections appropriate to the research being conducted and as required by applicable law and institutional policy by the start of the Grant period. Insurance requirements may include self-insurance, workers’ compensation insurance, commercial or government crime coverage (fidelity bond), general liability insurance, and vehicle insurance. Specific insurance requirements will be outlined in the contract.
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The Grantee is responsible for the acts and omissions of its employees, agents, contractors, researchers, and approved subrecipients in connection with the Grant.
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Nothing in this Agreement creates an employment, partnership, joint venture, agency, or fiduciary relationship between the Foundation and the Grantee.
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36. Indemnification
To the extent permitted by applicable law, the Grantee shall be responsible for claims, losses, damages, liabilities, and expenses arising from the Grantee’s negligent, reckless, or unlawful acts or omissions in conducting the research or administering the Grant.
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Nothing in this provision shall require the Foundation to indemnify the Grantee except as expressly agreed in writing.
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Any indemnification provision shall be subject to the applicable laws governing the Grantee and the Foundation.
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37. Suspension of Funding
The Foundation may suspend future payments if:
· Grant funds are being materially misused;
· Required reports are not submitted;
· Required regulatory approvals have expired or been withdrawn;
· The research materially departs from the approved project without authorization;
· The Grantee materially breaches the Agreement;
· Continued funding would violate applicable law; or
· The Foundation reasonably determines that continued funding would materially jeopardize its charitable purposes or tax-exempt status.
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The Foundation will provide reasonable notice and an opportunity to respond when circumstances permit.
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38. Termination
Either party may terminate the Grant in accordance with the Grant Agreement.
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The Foundation may terminate the Grant for material breach, misuse of charitable funds, loss of required regulatory approval, research misconduct, material violation of law, or other circumstances that make continued funding inconsistent with the Foundation’s charitable purposes.
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Upon termination, the Grantee shall cease expenditures of Grant funds except as reasonably necessary to wind down the project and shall return any unspent or improperly expended funds as directed by the Foundation.
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39. Changes in Principal Investigator
The Grantee shall notify the Foundation promptly if the Principal Investigator leaves the institution, becomes unable to conduct the research, or otherwise ceases to serve in that role.
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The Foundation may approve a replacement Principal Investigator when the proposed individual has appropriate qualifications and the change does not materially alter the approved project.
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40. Force Majeure
Neither party shall be liable for failure to perform an obligation caused by circumstances beyond its reasonable control, including natural disasters, epidemics, war, governmental action, or other extraordinary events.
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The affected party shall provide reasonable notice and work in good faith with the other party to determine whether the project can be modified, extended, or completed.
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41. Assignment
The Grantee may not assign or transfer the Grant Agreement or Grant funds to another institution without the Foundation’s prior written approval.
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42. Governing Law
The Grant Agreement shall be governed by the laws of the State of California, without regard to conflict-of-law principles, except to the extent that applicable federal law controls. Where the Grantee is a governmental or public institution prohibited by law from agreeing to the foregoing, the parties may agree in writing to an alternative governing law.
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Any dispute arising under the Agreement shall first be addressed through good-faith discussions between authorized representatives of the parties.
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43. Severability
If any provision of the Agreement is determined to be invalid, illegal, or unenforceable, that provision shall be modified or severed to the minimum extent necessary, and the remaining provisions shall remain in effect.
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44. Entire Agreement
The Grant Agreement constitutes the entire agreement between the Foundation and Grantee concerning the Grant and supersedes prior written or oral agreements concerning the same Grant.
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Any amendment must be made in writing and approved by authorized representatives of both parties.
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45. No Waiver
Failure by either party to enforce any provision of the Agreement shall not constitute a waiver of that provision or the right to enforce it in the future.
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46. Compliance With Charitable Purpose
Nothing in these Terms shall be interpreted to require the Foundation or Grantee to take an action that would cause either party to violate applicable law, jeopardize its tax-exempt status, or materially conflict with its governing charitable purposes.
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The Foundation reserves the right to modify administrative requirements when reasonably necessary to comply with changes in applicable law or regulatory requirements.
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47. Order of Precedence
If a conflict exists between these Terms and another Grant document, the following order of precedence shall apply unless the Grant Agreement expressly provides otherwise:
1. Applicable law;
2. The executed Grant Agreement;
3. Any written special conditions;
4. These Terms and Conditions;
5. The approved project proposal; and
6. The approved budget.
48. Acceptance
By accepting Grant funds, the Grantee acknowledges that it has reviewed these Terms and agrees to comply with them.
The Grantee represents that the individual signing the Grant Agreement has authority to bind the Grantee.
