Form 990-EZ for tax year 2024

Totals

Total revenue

$73,114

Total expenses

$34,293

Contributions and grants received

$64,478

Grants paid

— not reported

Program service revenue

— not reported

Membership dues (line 3)

— not reported

Investment income (line 4)

$8,636

Gain or loss on sale of assets (line 5c)

— not reported

Gaming and fundraising events, net (line 6d)

— not reported

Gross profit on inventory sales (line 7c)

— not reported

Other revenue (line 8)

— not reported

Total assets, end of year

$347,696

Total liabilities, end of year

$1,909

Net assets or fund balances, end of year

$345,787

Program service expenses (Part III)

$24,008

Program services were 70.0% of total expenses calculated — Part III's total program service expenses over total expenses, both as filed.

Mission and programs · 2024

• 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.

  Expenses $24,008

As filed on the 2024 return.

Listed in Part IV

Compensation is as filed in Part IV of the Form 990-EZ: compensation, contributions to benefit plans, expense account, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total.

Grants on this return

No itemized grants to organizations on this return.

Provenance

Return type

form_990_ez

Tax year

2024

Filed

11 June 2025

IRS schema version

2024v5.1

Source object

202511629349200436

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