Totals
- Total revenue
- $54,886
- Total expenses
- $31,603
- Contributions and grants received
- $54,621
- Grants paid
- $0
- Program service revenue
- $0
- Investment income
- $265
- Other revenue
- $0
- Total assets, end of year
- $307,368
- Total liabilities, end of year
- $402
- Net assets or fund balances, end of year
- $306,966
- Program services expenses (Part IX)
- $22,123
- Management and general expenses
- $6,321
- Fundraising expenses
- $3,159
- Program service expenses (Part III)
- $22,123
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
$28,000
-
1f · All other contributions, gifts and grants
$26,621
-
3 · Investment income
total $265 · related or exempt $265
-
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 $10,215 · program services $7,151 · management and general $2,043 · fundraising $1,021
-
11b · Fees: legal
total $0
-
11c · Fees: accounting
total $850 · program services $595 · management and general $170 · fundraising $85
-
11d · Fees: lobbying
total $0
-
11e · Fees: professional fundraising services
total $0
-
11f · Fees: investment management
total $0
-
11g · Fees: other
total $450 · program services $315 · management and general $90 · fundraising $45
-
12 · Advertising and promotion
total $4,288 · program services $3,002 · management and general $857 · fundraising $429
-
13 · Office expenses
total $0
-
14 · Information technology
total $0
-
15 · Royalties
total $0
-
16 · Occupancy
total $384 · program services $269 · management and general $77 · fundraising $38
-
17 · Travel
total $1,715 · program services $1,201 · management and general $343 · fundraising $171
-
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 $5,957 · program services $4,170 · management and general $1,191 · fundraising $596
-
24b · Other expenses: Patient Relations & Advocacy
total $5,282 · program services $3,697 · management and general $1,057 · fundraising $528
-
24c · Other expenses: Utilities
total $1,479 · program services $1,035 · management and general $296 · fundraising $148
-
24d · Other expenses: Printing and Publications
total $380 · program services $266 · management and general $76 · fundraising $38
-
24e · All other expenses
total $203 · program services $142 · management and general $41 · fundraising $20
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $123,605 · end of year $71,742
-
2 · Savings and temporary cash investments
beginning of year $160,361 · end of year $235,626
-
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
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
beginning of year $149 · end of year $402
-
27 · Net assets without donor restrictions
beginning of year $283,817 · end of year $306,966
Mission and programs · 2023
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.
-
In 2021, the NAF decided to shift its education efforts from Multifocal Motor Neuropathy (MMN) to Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). To that end we conducted an international 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. 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%). "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, said Jonathan Katz, Chief of Neuromuscular Services at California Pacific Medical Center. 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. It was clear from the results that we need to do a better job of bringing awareness to CIDP.Therefore, in 2023 the NAF launched a nationwide targeted digital education awareness campaign on CIDP. The 2023 NAF social media advertising campaign aimed at growing awareness and providing resources about Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) to those whose lives have been affected by the condition. The campaigns primary aim was to generate leads (email contacts) and raise awareness about CIDP among people who may be unknowingly living with the condition, people who are seeking treatment options or additional information, and members of the medical community. Leads are valuable for NAF because they enable us to continue to raise awareness, to keep CIDP and NAF top-of-mind for providers through email outreach, and to encourage patients to talk to their doctor to see if they might possibly be living with CIDP. The campaign featured a series of graphic elements representing key patient profiles; new leads were incentivized by a PDF resource that outlines key facts about CIDP, and our ads were seen over 1.5 million times during the two-month campaign (an increase of 344,687%), earning the organization over 9,000 individuals email addresses, consisting of a mix of patients, caregivers, and neurologists. Additionally, we received over 59,000 social media engagements on Facebook and Instagram (a 1.2 million percent increase!) and observed our website traffic increase drastically. Our ads average click-through-rate was 2.9%, well above the platform benchmark of 0.83%, meaning that we were able to successfully deliver relevant advertising to users based on their demographic profiles. From the patient and caregiver perspective, we received the greatest interest from women 65+. Additionally, users identifying as female consistently comprised nearly 90% of the leads generated by the campaign, and users over the age of 65 ultimately made up nearly 64% of total leads. For the section that states: Other 2023 services provided and accomplishments include: please just update the numbers in red font below:The NAF continued its bi-monthly Patient Voice newsletterHelped over 200 patients with medication access issuesAnswered over 1,200 patient emails/phone calls and either emailed or mailed over 375 informational brochures to patients across the U.S.Continued 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 life.
Expenses $22,123
As filed on the 2023 return.
Listed in Part VII
-
Dominick V Spatafora
President
- Total calculated
- $0
- Hours/week
- 11.5
-
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
-
Christopher DeSantis
Executive Dir.
- Total calculated
- $0
- Hours/week
- 4
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
- 2023
- Filed
- 22 May 2024
- IRS schema version
- 2023v5.0
- Source object
- 202411439349301411
Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.
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