Liabilities / Assets
62nd percentile
Higher debt load relative to assets than 62% of similar nonprofits.
990EZ • Fiscal year 2024 • EIN 20-4792248
Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.
Liabilities / Assets
62nd percentile
Higher debt load relative to assets than 62% of similar nonprofits.
Liabilities / Revenue
73rd percentile
Higher debt load relative to revenue than 73% of similar nonprofits.
Net Margin
91st percentile
Higher net margin than 91% of similar nonprofits.
Top Officer Pay
79th percentile
Higher top officer pay than 79% of similar nonprofits.
Top officer pay equals 0.0% of source-year revenue.
Asset Growth
67th percentile
Faster asset growth than 67% of similar nonprofits.
Revenue Growth
77th percentile
Faster revenue growth than 77% of similar nonprofits.
Assets
Up$347,696
Up $40,328 (+13%) from 2023
Net Assets
Up$345,787
Up $38,821 (+13%) from 2023
Liabilities
Up$1,909
Up $1,507 (+375%) from 2023
Revenue
Up$73,114
Up $18,228 (+33%) from 2023
Expenses
Up$34,293
Up $2,690 (+8.5%) from 2023
Net Income
Up$38,821
Up $15,538 (+67%) from 2023
To educate the general public, healthcare providers, patients and decision makers on what Neuropathy is and to help Neuropathy patients obtain access to individualized treatments.
| Description | Grants | Expenses |
|---|---|---|
| In 2024 the NAF published two white papers. The first focuses on the future of Gene Therapy and urges innovative policy approaches to ensure patient access. In the paper, the NAF recommends policy changes to address cost, risk, and outcomes of innovative new treatments. The white paper is titled: The Promise of Gene Therapy for Neuropathy and Rare Diseases. It explores the transformative potential of gene therapy for neuropathy and other patients and details policy considerations to ensure equitable patient access to these revolutionary treatments. The promise of gene therapy is immense, particularly for patients with neuropathy and other conditions with limited or no treatment options. Neuropathy patients, researchers, and clinicians are all hopeful that gene therapy products can create new options for treatment for certain kinds of neuropathy, including inherited peripheral neuropathy (IPN), which is caused by generic mutations in more than 100 genes. For patients to access these innovative therapies, however, innovative policies will also be required.Neuropathy Action Foundation on lays out three foundational adaptations that the healthcare system will have to make to ensure patient access to gene therapy, including:Centering Patient and Family Input: The white paper highlights the critical need for policies that prioritize patient-driven preferences and values when it comes to coverage decisions. Shared decision-making at its best is patient-centered and focuses on a patients (and sometimes a familys) preferences about whether to use a medical intervention and which one might work best considering the patients unique medical and non-medical circumstances.Assessing Value Appropriately: Traditional methods of evaluating the value of medical interventions must evolve to incorporate patient-centered outcomes and preferences. Incorporating a broader range of outcomes and patient-driven value elements will become even more critical as interventions continue to be made available to patients.Creating New Payment Models: Innovative payment models should offset the current exorbitant costs and uncertain es associated with gene therapy. These models should mitigate financial risks, ensure equitable access, and accommodate the unique challenges posed by gene therapy's upfront costs and uncertain outcomes.Gene therapy is a cutting-edge approach that leverages genes to prevent, treat, or cure medical conditions by inactivating, repairing, or replacing faulty genes. Despite its decades-long scientific foundation, gene therapy represents a shift in healthcare and the translation of gene therapy from laboratory research to clinical application remains in its infancy. The first gene therapy product for young patients with a form of leukemia was only approved for use in the U.S. in 2017. According to the American Society of Gene + Cell Therapy, more than 2,000 gene therapies are in development worldwide. As of December 2023, more than 30 gene therapy products have been approved by the U.S. Food and Drug Administrations (FDA) Center for Biologics Evaluation and Research (CBER). If this rate of development continues, in the next ten years, an estimated 750,000 to 1 million patients will have access to more than 60 gene therapy products in the U.S.The second white paper is titled: The Promise and Potential Hazards of Artificial Intelligence (AI) for Neuropathy and the NAF issued a call to action for increased awareness and advocacy around the use of AI to prevent potential abuses. Researchers and clinicians are already using artificial intelligence to revolutionize research and interventions for patients living with neuropathy, including to diagnose neuropathy earlier, predict disease progression, and to create personalized treatment regimens.In the white paper, Neuropathy Action Foundation lays out six broad categories of AI applications in neuropathy, including: 1.Early Detection and Diagnosis of Neuropathy2.Predicting the Progression of Neuropathy3.Managing and Monitoring Symptoms4.Personalized Treatment Plans5.Clinical Trials and Drug Discovery6.Education and Training for Health Care ProvidersDespite its great promise, AI is not without potential pitfalls and risks for patients, including the potential for bias in AI modeling and the use of AI by health insurers to inform coverage determinations and possibly to deny claims. While these hazards could affect all patients, those patients living with neuropathy are more likely to confront diagnostic uncertainty, encounter limited or inadequate treatment options and grapple with barriers to access to care, such as step therapy requirements and claims denials. Ongoing awareness and advocacy by patients, families, providers, and policymakers will be necessary to balance the hopes and hazards of AI in the research, diagnosis, treatment, and management of neuropathy.AI is a machine-based system that uses input it receives to generate outputs, such as inferences, predictions, recommendations, or decisions influencing physical or virtual environments. Essentially, AI tries to mimic how humans think and act but does it faster and in a more in-depth way than humans. Some of the most promising uses of AI generally are the automation of repetitive tasks and faster, deeper analysis of expansive amounts of data. In the field of health care, AI is frequently implemented by a health care professional to support scientific or clinical decision-making. For patients with neuropathy, AI is increasingly being used in diagnosis, treatment, and management of the condition, as well as in research. Neuropathy, particularly peripheral neuropathy, involves damage to the nerves outside the brain and spinal cord and can result from various causes, including autoimmune diseases, chemotherapy, diabetes, genetic disorders, and infections. | - | $24,008 |
| Name | Title | Full / Part Time | Base | Other | Total |
|---|---|---|---|---|---|
| Dominick V Spatafora | President | PT | $0 | - | - |
| Christopher DeSantis | Executive Director | - | $0 | - | - |
| James D Lee JD | Director | - | $0 | - | - |
| Dustin Corcoran | Director | - | $0 | - | - |
| Leslie Macgregor Levine | Secretary | - | $0 | - | - |
| Jonathan Medeiros | Director | - | $0 | - | - |
| Christopher Buchanan | Director | - | $0 | - | - |
| Richard S Zimmerman MD | Director | - | $0 | - | - |
| Kathleen S Creason | Treasurer | - | $0 | - | - |
| Sarah J Fullerton | Director | - | $0 | - | - |
“Advertising and Promotion $1503”
“Information Technology $4137”
“Travel $1638”
“Insurance $400”
“Patient Relations & Advocacy $7707”
“Patient Education/Awareness $3750”
“Utilities $1561”
“Taxes & Licenses $25”
“Accounts Payable and Accrued Expenses - Beginning $402 Accounts Payable and Accrued Expenses - Ending $1909”
“The NAF continued its bi-monthly Patient Voice newsletterHelped over 240 patients with medication access issuesAnswered over 900 patient emails/phone calls and either emailed or mailed over 200 informational brochures to patients across the U.SContinued a Diabetic Peripheral Neuropathy (DPN) awareness campaign in Spanish and EnglishThrough our website (which is constantly updated) and patient brochures the NAF reached millions of patients and interested parties obtain the necessary resources, information and tools to access individualized treatment to improve their quality of lifeParticipated in numerous state and federal patient coalitionsParticipated in various state and federal advocacy campaignsIssued two White Papers”
This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.
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| IRS990EZ/PrimaryExemptPurposeTxt | 0 | To educate the general public, healthcare providers, patients and decision makers on what Neuropathy is and to help Neuropathy patients obtain access to individualized treatments. |
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| IRS990EZ/ProgramSrvcAccomplishmentGrp/DescriptionProgramSrvcAccomTxt | 0 | In 2024 the NAF published two white papers. The first focuses on the future of Gene Therapy and urges innovative policy approaches to ensure patient access. In the paper, the NAF recommends policy changes to address cost, risk, and outcomes of innovative new treatments. The white paper is titled: The Promise of Gene Therapy for Neuropathy and Rare Diseases. It explores the transformative potential of gene therapy for neuropathy and other patients and details policy considerations to ensure equitable patient access to these revolutionary treatments. The promise of gene therapy is immense, particularly for patients with neuropathy and other conditions with limited or no treatment options. Neuropathy patients, researchers, and clinicians are all hopeful that gene therapy products can create new options for treatment for certain kinds of neuropathy, including inherited peripheral neuropathy (IPN), which is caused by generic mutations in more than 100 genes. For patients to access these innovative therapies, however, innovative policies will also be required.Neuropathy Action Foundation on lays out three foundational adaptations that the healthcare system will have to make to ensure patient access to gene therapy, including:Centering Patient and Family Input: The white paper highlights the critical need for policies that prioritize patient-driven preferences and values when it comes to coverage decisions. Shared decision-making at its best is patient-centered and focuses on a patients (and sometimes a familys) preferences about whether to use a medical intervention and which one might work best considering the patients unique medical and non-medical circumstances.Assessing Value Appropriately: Traditional methods of evaluating the value of medical interventions must evolve to incorporate patient-centered outcomes and preferences. Incorporating a broader range of outcomes and patient-driven value elements will become even more critical as interventions continue to be made available to patients.Creating New Payment Models: Innovative payment models should offset the current exorbitant costs and uncertain es associated with gene therapy. These models should mitigate financial risks, ensure equitable access, and accommodate the unique challenges posed by gene therapy's upfront costs and uncertain outcomes.Gene therapy is a cutting-edge approach that leverages genes to prevent, treat, or cure medical conditions by inactivating, repairing, or replacing faulty genes. Despite its decades-long scientific foundation, gene therapy represents a shift in healthcare and the translation of gene therapy from laboratory research to clinical application remains in its infancy. The first gene therapy product for young patients with a form of leukemia was only approved for use in the U.S. in 2017. According to the American Society of Gene + Cell Therapy, more than 2,000 gene therapies are in development worldwide. As of December 2023, more than 30 gene therapy products have been approved by the U.S. Food and Drug Administrations (FDA) Center for Biologics Evaluation and Research (CBER). If this rate of development continues, in the next ten years, an estimated 750,000 to 1 million patients will have access to more than 60 gene therapy products in the U.S.The second white paper is titled: The Promise and Potential Hazards of Artificial Intelligence (AI) for Neuropathy and the NAF issued a call to action for increased awareness and advocacy around the use of AI to prevent potential abuses. Researchers and clinicians are already using artificial intelligence to revolutionize research and interventions for patients living with neuropathy, including to diagnose neuropathy earlier, predict disease progression, and to create personalized treatment regimens.In the white paper, Neuropathy Action Foundation lays out six broad categories of AI applications in neuropathy, including: 1.Early Detection and Diagnosis of Neuropathy2.Predicting the Progression of Neur |
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| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 8 | Accounts Payable and Accrued Expenses - Beginning $402 Accounts Payable and Accrued Expenses - Ending $1909 |
| IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt | 9 | The NAF continued its bi-monthly Patient Voice newsletterHelped over 240 patients with medication access issuesAnswered over 900 patient emails/phone calls and either emailed or mailed over 200 informational brochures to patients across the U.SContinued a Diabetic Peripheral Neuropathy (DPN) awareness campaign in Spanish and EnglishThrough our website (which is constantly updated) and patient brochures the NAF reached millions of patients and interested parties obtain the necessary resources, information and tools to access individualized treatment to improve their quality of lifeParticipated in numerous state and federal patient coalitionsParticipated in various state and federal advocacy campaignsIssued two White Papers |
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| IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc | 9 | Form 990-EZ, Part III, LIne 31 Other program services |
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| ReturnHeader/TaxPeriodEndDt | 0 | 2024-12-31 |
| ReturnHeader/TaxYr | 0 | 2024 |
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Displayed year
2024 • Form 990EZDetailed filing. Detailed filing data is available for this year.