NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC

EIN: 264826165 501(c)(3) Community Improvement

CARY, NC

Total Revenue
$407,798
Total Expenses
$404,755
Total Assets
$409,988
Net Assets
$405,918
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Organization Details

Formation Year
2009
Legal Domicile
NC
Principal Officer
ANTHONY MARTINEZ
Phone
9198038128
Tax Period
2025-01-01 to 2025-12-31

NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC, founded in 2009, is a small nonprofit in the Community Improvement sector that reported $408K in total revenue in fiscal year 2025.

Mission

TO IMPROVE THE CARE OF PEOPLE WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES BY CONNECTING THEM TO MEDICAL CARE AND COMMUNITY SUPPORT. TO INCREASE THE UNDERSTANDING OF HUNTINGTON'S DISEASE IN THE GENERAL COMMUNITY, HEALTHCARE PROVIDERS, HEALTHCARE FACILITIES, AND GOVERNMENT AND CHARITABLE PROGRAMS.

Program Service Accomplishments

Program 1
Expenses: $42,534 Revenue: $1,476

ACCESS TO CARE PROGRAM:1. PATIENT-CENTERED GOAL-DIRECTED CARE NAVIGATION (INCLUDING NEEDS ASSESSMENTS), PATIENT FAMILY EDUCATION, AND ADVOCATING SERVICES, AND OVERCOMING BARRIERS TO CARE2. REFERRALS...

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ACCESS TO CARE PROGRAM:1. PATIENT-CENTERED GOAL-DIRECTED CARE NAVIGATION (INCLUDING NEEDS ASSESSMENTS), PATIENT FAMILY EDUCATION, AND ADVOCATING SERVICES, AND OVERCOMING BARRIERS TO CARE2. REFERRALS TO APPROPRIATE SOURCE OF MEDICAL CARE OR NEEDED RESOURCES3. TELEPHONE SUPPORTLOCATION OF ACTIVITY:PRIMARY OFFICE, RALEIGH, NC; SOCIAL WORKER LOCATED IN RALEIGH, NC; CARE NAVIGATOR AVAILABLE BY PHONEPARTNERSHIPS:PARTNERSHIPS WITH HUNTINGTON'S DISEASE (HD) CLINICS AT DUKE UNIVERSITY, UNC CHAPEL HILL, AND WAKE FOREST UNIVERSITY.PURPOSE:TO FACILITATE ENTRY TO MEDICAL CARE BY PERFORMING NEEDS ASSESSMENTS, REFERRAL TO APPROPRIATE SOURCE OF HELP, FOLLOW-UP ON TREATMENT PLAN DEVELOPED DURING HD CLINICS, AND OFFER SUPPORT TO HOME-BOUND FAMILIES.NUMBER OF PERSONS SERVED IN 2025:7679 CLIENT NOTES, REPRESENTING 465 UNIQUE CLIENTS.

Program 2
Expenses: $127,601 Revenue: $4,428

OUTREACH PROGRAM:1. IMPROVE AWARENESS IN HD FAMILIES2. IMPROVE AWARENESS WITH HEALTHCARE PROVIDERS3. RESOURCE DEVELOPMENTLOCATIONS OF ACTIVITY:RALEIGH, NC; CHARLOTTE, NC; WILMINGTON, NC; GREENVILLE...

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OUTREACH PROGRAM:1. IMPROVE AWARENESS IN HD FAMILIES2. IMPROVE AWARENESS WITH HEALTHCARE PROVIDERS3. RESOURCE DEVELOPMENTLOCATIONS OF ACTIVITY:RALEIGH, NC; CHARLOTTE, NC; WILMINGTON, NC; GREENVILLE, NC; WINSTON-SALEM, NC; ASHEVILLE, NC.PURPOSE:1. TO INCREASE AWARENESS IN NC HD PATIENTS AND FAMILIES OF HELP AND MEDICAL CARE AVAILABLE.2. TO INCREASE AWARENESS OF HD WITH HEALTHCARE PROVIDERS, HEALTHCARE FACILITIES, AND GOVERNMENT AND CHARITABLE PROGRAMS.3. PARTNERSHIP CREATION WITH EXISTING PROGRAMS THAT PROVIDE SERVICES NEEDED BY HD FAMILIES.OUTREACH METRICS (2025):* NUMBER OF PERSONS THAT OPENED AN EMAIL FROM US IN 2025 - 76,799 TOTAL EMAILS SENT, 49,757 OPENED, OPEN RATE 41% * NUMBER OF MID-YEAR APPEAL LETTERS SENT WITH INFORMATION ABOUT HD REACH: 1,163* NUMBER OF END-OF-YEAR LETTERS WITH INFORMATION ABOUT HD REACH: 1,455* NUMBER OF APPEAL LETTERS SENT IN 2025: 2,618* NUMBER OF OUTREACH POSTCARDS MAILED IN 2025: 300* NUMBER OF INSTAGRAM LIKES IN 2025: 1,561* NUMBER OF FACEBOOK LIKES IN 2025: 1,675

Program 3
Expenses: $89,020 Revenue: $2,460

EDUCATION PROGRAM - FAMILIES:1. WEBSITE DEVELOPMENT2. SUPPORT GROUP PARTICIPATION3. ANNUAL FAMILY EDUCATION DAY4. SPECIAL TOPICS WORKSHOPSLOCATIONS OF ACTIVITY:RALEIGH, NC; CHARLOTTE, NC...

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EDUCATION PROGRAM - FAMILIES:1. WEBSITE DEVELOPMENT2. SUPPORT GROUP PARTICIPATION3. ANNUAL FAMILY EDUCATION DAY4. SPECIAL TOPICS WORKSHOPSLOCATIONS OF ACTIVITY:RALEIGH, NC; CHARLOTTE, NC; WINSTON-SALEM, NC; GREENVILLE, NC; WILMINGTON, NC; AND ASHEVILLE, NC.PURPOSE:TO EDUCATE FAMILIES ABOUT NEW INITIATIVES IN HD RESEARCH, EDUCATE FAMILIES ABOUT HD REACH PROGRAMS, AND DETAIL RESOURCES AVAILABLE TO PATIENTS AND FAMILIES, AND CREATE OPPORTUNITIES FOR FAMILIES TO MEET AND LEARN FROM OTHER HD FAMILIES. NUMBER OF FAMILY ADVISORY BOARD ATTENDEES: 8 (6 MEETINGS)NUMBER OF BOOK CLUB ATTENDEES: 187 (12 MEETINGS)NUMBER OF GAME OVER CLUB ATTENDEES: 372 (194 MEETINGS)NUMBER OF SUPPORT GROUP ATTENDEES: 333NUMBER OF SUPPORT GROUP MEETINGS - TRIANGLE: 11 (69 ATTENDEES)NUMBER OF SUPPORT GROUP MEETINGS - CHARLOTTE: 11 (375 ATTENDEES)NUMBER OF SUPPORT GROUP MEETINGS - WILMINGTON: 11 (58 ATTENDEES)NUMBER OF SUPPORT GROUP MEETINGS - WINSTON-SALEM: 20 (131 ATTENDEES)NUMBER OF SUPPORT GROUP MEETINGS - ASHEVILLE: 0 (0 ATTENDEES)EDUCATION DAY - 118 IN-PERSON ATTENDEES.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2025)

Revenue Breakdown

Contributions & Grants $381,392
Program Service Revenue $12,342
Investment Income $10,823
Other Revenue $3,241
TOTAL REVENUE $407,798

Expense Breakdown

Grants Paid $0
Salaries & Benefits $357,363
Fundraising Expenses $51,150
Program Expenses $301,685
Other Expenses $47,392
TOTAL EXPENSES $404,755

Year-over-Year Comparison

2025 2024 Change
Revenue $407,798 $390,966 +0.0%
Expenses $404,755 $388,950 +0.0%
Net Income $3,043 $2,016 +0.5%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
10
Independent Members
10
Employees
4
Volunteers
63

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
3
$0
Total Directors
10
$0
Key Employees
0
$0
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
ANTHONY MARTINEZ CHAIR 2.00
Officer Director
$0 $0 $0
DAVE KERN GOVERNANCE 2.00
Director
$0 $0 $0
BURTON SCOTT DIRECTOR 1.00
Director
$0 $0 $0
MARLENE CIVIS TREASURER 2.00
Officer Director
$0 $0 $0
MCKENZIE LUXMORE DIRECTOR 1.00
Director
$0 $0 $0
SHIRLEY HUGHES DIRECTOR 1.00
Director
$0 $0 $0
ALEASE DANIEL BARNES VICE CHAIR/GOVERNANCE 1.00
Officer Director
$0 $0 $0
GRANT DEHAVEN DIRECTOR 1.00
Director
$0 $0 $0
LAUREN HAUGHT DIRECTOR 1.00
Director
$0 $0 $0
RICK GIURLANDO DIRECTOR 1.00
Director
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 $407,798 $404,755 $409,988 $3,043
2024 No data No data No data No data
2023 $479,367 $408,498 $381,512 $70,869
2022 $416,334 $300,088 $309,953 $116,246
2021 $351,975 $273,276 $195,951 $78,699
2020 $285,897 $274,723 $164,758 $11,174
2019 $268,121 $324,941 $103,698 $-56,820
2018 $283,216 $249,695 $161,197 $33,521
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