Totals
- Total revenue
- $69,500
- Total expenses
- $75,326
- Contributions and grants received
- $69,458
- Grants paid
- $0
- Program service revenue
- $0
- Investment income
- $42
- Other revenue
- $0
- Total assets, end of year
- $283,966
- Total liabilities, end of year
- $149
- Net assets or fund balances, end of year
- $283,817
- Program services expenses (Part IX)
- $52,729
- Management and general expenses
- $15,067
- Fundraising expenses
- $7,530
- Program service expenses (Part III)
- $52,729
Program services were 70.0% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
Line items
Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.
Revenue
Part VIII, the statement of revenue.
-
1d · Related organizations
$42,755
-
1f · All other contributions, gifts and grants
$26,703
-
2a · Program service revenue: Auction Items
-
2b · Program service revenue: Exhibit Income
-
2c · Program service revenue: Registration
-
3 · Investment income
total $42 · related or exempt $42
-
4 · Income from investment of tax-exempt bond proceeds
total $0
-
5 · Royalties
total $0
-
6d · Net rental income or loss
total $0
-
7d · Net gain or loss
total $0
-
8c · Net income from fundraising events
total $0
-
9c · Net income from gaming
total $0
-
10c · Net income from sales of inventory
total $0
-
11e · Other revenue, total
$0
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $0
-
2 · Grants to domestic individuals
total $0
-
3 · Grants to foreign organizations and individuals
total $0
-
4 · Benefits paid to or for members
total $0
-
5 · Compensation of officers, directors and key employees
total $0
-
6 · Compensation of disqualified persons
total $0
-
7 · Other salaries and wages
total $0
-
8 · Pension plan contributions
total $0
-
9 · Other employee benefits
total $0
-
10 · Payroll taxes
total $0
-
11a · Fees: management
total $8,595 · program services $6,017 · management and general $1,719 · fundraising $859
-
11b · Fees: legal
total $0
-
11c · Fees: accounting
total $800 · program services $560 · management and general $160 · fundraising $80
-
11d · Fees: lobbying
total $0
-
11e · Fees: professional fundraising services
total $0
-
11f · Fees: investment management
total $0
-
11g · Fees: other
total $404 · program services $283 · management and general $81 · fundraising $40
-
12 · Advertising and promotion
total $2,793 · program services $1,955 · management and general $559 · fundraising $279
-
13 · Office expenses
total $3 · program services $2 · management and general $1
-
14 · Information technology
total $0
-
15 · Royalties
total $0
-
16 · Occupancy
total $2,613 · program services $1,829 · management and general $523 · fundraising $261
-
17 · Travel
total $2,379 · program services $1,665 · management and general $476 · fundraising $238
-
18 · Travel or entertainment for public officials
total $0
-
19 · Conferences, conventions and meetings
total $0
-
20 · Interest
total $0
-
21 · Payments to affiliates
total $0
-
22 · Depreciation, depletion and amortization
total $0
-
23 · Insurance
total $400 · program services $280 · management and general $80 · fundraising $40
-
24a · Other expenses: Patient Education/Awareness
total $55,000 · program services $38,500 · management and general $11,000 · fundraising $5,500
-
24b · Other expenses: Utilities
total $1,575 · program services $1,103 · management and general $315 · fundraising $157
-
24c · Other expenses: Patient Relations & Advocacy
total $679 · program services $475 · management and general $136 · fundraising $68
-
24d · Other expenses: Taxes & Licenses
total $75 · program services $53 · management and general $15 · fundraising $7
-
24e · All other expenses
total $10 · program services $7 · management and general $2 · fundraising $1
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $126,859 · end of year $123,605
-
2 · Savings and temporary cash investments
beginning of year $160,319 · end of year $160,361
-
3 · Pledges and grants receivable
end of year $0
-
4 · Accounts receivable
end of year $0
-
5 · Loans and receivables from officers and key people
end of year $0
-
6 · Loans and receivables from disqualified persons
end of year $0
-
7 · Other notes and loans receivable
end of year $0
-
8 · Inventories for sale or use
end of year $0
-
9 · Prepaid expenses and deferred charges
beginning of year $184 · end of year $0
-
10c · Land, buildings and equipment, net
end of year $0
-
11 · Investments: publicly traded securities
end of year $0
-
12 · Investments: other securities
end of year $0
-
13 · Investments: program-related
end of year $0
-
14 · Intangible assets
end of year $0
-
15 · Other assets
end of year $0
-
17 · Accounts payable and accrued expenses
end of year $149
-
27 · Net assets without donor restrictions
beginning of year $287,362 · end of year $283,817
Mission and programs · 2022
Mission
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.
-
Following a successful five year Multifocal Motor Neuropathy MMN education campaign which resulted in three patient videos, thousands of new grassroots advocates, and over 1 million ad impressions we shifted our educational efforts to Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). In 2021, the Neuropathy Action Foundation conducted and announced the results from an international Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Quality of Life (QOL) Patient Survey. The survey focused on three primary areas: timely and accurate diagnosis, efficacy of treatment, and the impact of the disease on patients quality of life. This survey is important because early and accurate diagnosis can mean the difference between CIDP patients being successfully managed or becoming permanently disabled. Timely treatment can make a big difference in patients lives. The NAF believes these survey results will increase awareness and action among providers, the public and public policy officials. The majority of the 297 participants completing the survey were males (62%) from the United States (88%) with respondents from five other countries contributing to the results. While 70% of respondents reported that they were diagnosed between the ages of 41 and 65 years old, more than 54% of those completing the survey reported that it took more than one year to be accurately diagnosed. The majority of the misdiagnoses were made by Neurologists (60%) and Family Care Providers (21%). These results demonstrated that it is very clear that we need to do a better job at accurately diagnosing these patients. The sooner we can identify CIDP, the sooner we can start individuals on the proper therapy, alleviate their symptoms and improve their lives. When asked about treatment options, 76% reported receiving intravenous immunoglobulin (IVIg) and 11% reported receiving subcutaneous immunoglobulin (SCIg). A reduction in symptoms was reported within three months of their first Ig treatment by 68% of respondents. Only 7% reported that Ig did not help them manage their symptoms. If recommended by their Neurologist, 67% would consider SCIg treatment. Interruptions in treatment due to COVID-19 were experienced by 39% of the respondents. Nearly 30% of all participants stated that CIDP often or always interferes with their employment and 51% said it impacts their quality of life. Loss of balance (51%) and weakness in legs (49%) were the most common symptoms before starting treatment. CIDP has a direct impact the participant's emotional wellbeing. Fatigue was reported by 43% of the respondents. Some 46% reported feeling depressed and 28% of those completing the survey said they had time when they felt hopeless. Feeling embarrassed by their physical limitations was a concern for 49% of respondents. The survey results illustrate the complexity of CIDP and the impact it can have on peoples lives. The good news is that the data also shows that treatment helps many individuals.Other 2021 services provided and accomplishments include:The NAF continued its bi-monthly Patient Voice newsletter.Helped over 175 patients with medication access issues.Answered over 1,000 patient emails/phone calls and either emailed or mailed over 500 informational brochures to patients across the U.S.Continued a Diabetic Peripheral Neuropathy (DPN) awareness campaign in Spanish and English.Through 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 life.Continued to partner with numerous state and national coalitions and organizations to ensure individualized care and access to treatments and medications through policy, legislative, grassroots and traditional/social media efforts.
Expenses $52,729
As filed on the 2022 return.
Listed in Part VII
-
Dominick V Spatafora
President
- Total calculated
- $0
- Hours/week
- 11.5
-
Christopher DeSantis
Executive Dir.
- Total calculated
- $0
- Hours/week
- 4
-
James D Lee JD
Director
- Total calculated
- $0
- Hours/week
- 1.5
-
Dustin Corcoran
Director
- Total calculated
- $0
- Hours/week
- 0.25
-
Leslie Macgregor Levine
Secretary
- Total calculated
- $0
- Hours/week
- 1.5
-
Christopher Buchanan
Director
- Total calculated
- $0
- Hours/week
- 0
-
Richard S Zimmerman MD
Director
- Total calculated
- $0
- Hours/week
- 0.23
-
Kathleen S Creason
Treasurer
- Total calculated
- $0
- Hours/week
- 0.23
-
Sarah J Fullerton
Director
- Total calculated
- $0
- Hours/week
- 0
Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, 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. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those.
Grants on this return
No itemized grants to organizations on this return.
Provenance
- Return type
- form_990
- Tax year
- 2022
- Filed
- 20 July 2023
- IRS schema version
- 2022v5.0
- Source object
- 202312019349300121
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