Nonprofit · EIN 26-4826165
NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTONS DISEASE INC
Also known as NC-CCHD
Tax-exempt · CARY, NC 27518
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $407,798 | $404,755 | $3,043 | $409,988 | $4,070 | $405,918 |
| December 31, 2024 | 990 | $390,966 | $388,950 | $2,016 | $400,104 | $4,971 | $395,133 |
| December 31, 2023 | 990 | $479,367 | $408,498 | $70,869 | $381,512 | $1,526 | $379,986 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $381,392
- Program service revenue
- $12,342
- Investment income
- $10,823
- Net income from fundraising events
- $3,241
- Other revenue
- $3,241
Expenses
- Grants and similar amounts paid
- $0
- Other salaries and wages
- $299,141
- Salaries, compensation and benefits (total)
- $357,363
- Professional fundraising fees
- $0
- Legal fees
- $288
- Accounting fees
- $7,334
- Depreciation
- $326
- Program services (functional)
- $301,685
- Management and general (functional)
- $51,920
- Fundraising (functional)
- $51,150
Balance sheet and other
- Total assets, start of year
- $400,104
- Total assets, end of year
- $409,988
- Total liabilities, end of year
- $4,070
- Net assets, end of year
- $405,918
- Land, buildings and equipment
- $1,196
- Publicly traded securities
- $128,315
- Net assets without donor restrictions
- $315,918
- Net assets with donor restrictions
- $90,000
- Gross receipts
- $430,134
- Employees
- 4
- Volunteers
- 63
- Year formed
- 2009
- State of legal domicile
- NC
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| ANTHONY MARTINEZ | CHAIR Trustee or director, Officer | 2 | $0 |
| DAVE KERN | GOVERNANCE Trustee or director | 2 | $0 |
| BURTON SCOTT | DIRECTOR Trustee or director | 1 | $0 |
| MARLENE CIVIS | TREASURER Trustee or director, Officer | 2 | $0 |
| MCKENZIE LUXMORE | DIRECTOR Trustee or director | 1 | $0 |
| SHIRLEY HUGHES | DIRECTOR Trustee or director | 1 | $0 |
| ALEASE DANIEL BARNES | VICE CHAIR/GOVERNANCE Trustee or director, Officer | 1 | $0 |
| GRANT DEHAVEN | DIRECTOR Trustee or director | 1 | $0 |
| LAUREN HAUGHT | DIRECTOR Trustee or director | 1 | $0 |
| RICK GIURLANDO | DIRECTOR Trustee or director | 1 | $0 |
990 for the year ended December 31, 2024: 11 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| ANTHONY MARTINEZ | CHAIR Trustee or director, Officer | 2 | $0 |
| CHAD MERRELL | VICE CHAIR Trustee or director, Officer | 2 | $0 |
| CHRIS MICHALAK | TREASURER Trustee or director, Officer | 2 | $0 |
| BURTON SCOTT | DIRECTOR Trustee or director | 1 | $0 |
| SHANE HERRING | DIRECTOR Trustee or director | 1 | $0 |
| TERRY BUEHNER | DIRECTOR Trustee or director | 1 | $0 |
| ALEASE DANIEL BARNES | DIRECTOR Trustee or director | 1 | $0 |
| MARLENE CIVIS | DIRECTOR Trustee or director | 1 | $0 |
| LAUREN HAUGHT | DIRECTOR Trustee or director | 1 | $0 |
| RICK GIURLANDO | DIRECTOR Trustee or director | 1 | $0 |
| JULIA LUTZ | DIRECTOR Trustee or director | 1 | $0 |
990 for the year ended December 31, 2023: 8 people
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| TERRY BUEHNER | DIRECTOR Trustee or director | 1 | $0 |
| CHAD MERRELL | GOVERNANCE CHAIR Trustee or director, Officer | 2 | $0 |
| CHRIS MICHALAK | TREASURER Trustee or director, Officer | 2 | $0 |
| CRAIG CHEPKE | DIRECTOR Trustee or director | 1 | $0 |
| SHANE HERRING | DIRECTOR Trustee or director | 1 | $0 |
| BURTON SCOTT | SECRETARY Trustee or director, Officer | 1 | $0 |
| ANTHONY MARTINEZ | CHAIR Trustee or director, Officer | 2 | $0 |
| ALEASE DANIEL | DIRECTOR Trustee or director | 1 | $0 |
Address and contacts
- Address (IRS master file)
- 2054 KILDAIRE FARM ROAD 427, CARY, NC 27518-6614
- In care of
- % MARY EDMONDSON MD
- Principal officer (990 for 2025)
- ANTHONY MARTINEZ, 2054 KILDAIRE FARM ROAD 427, CARY, NC 27518
- Signed the 990
- ANTHONY MARTINEZ, TREASURER
- Phone
- (919) 803-8128
- Website
- WWW.HDREACH.ORG
- Return prepared by
- SHARPE PATEL CPA
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 accomplishments
- 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.Expenses $42,534 · revenue $1,476
- 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: 1,675Expenses $127,601 · revenue $4,428
- 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.Expenses $89,020 · revenue $2,460
- EDUCATION PROGRAM - HEALTH CARE PROFESSIONALS:PURPOSE - TO IMPROVE KNOWLEDGE AND MEDICAL CARE OF HD: ITS DIAGNOSIS, TREATMENT, ON-GOING AND FUTURE RESEARCH FINDINGS, AND CREATE A MEETING FORUM FOR KNOWLEDGE EXCHANGE.NUMBER OF MEETINGS/FORUMS IN 2025: 2CLINIC VISITS: 26SKILLED NURSING FACILITY TRAINING: 3CLINIC TRAININGS: 2FIRST RESPONSE TRAININGS: 4RESOURCE TRAININGS: 2HEALTH FAIRS: 2Expenses $42,530 · revenue $1,476
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 26-4826165
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 2009
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Community improvement and capacity building (S41)
- Assets (IRS master file)
- $409,988
- Income (IRS master file)
- $430,134
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $407,798 | $404,755 | $409,988 | XML |
| 990 | December 2024 | $390,966 | $388,950 | $400,104 | IRS |
| 990 | December 2023 | $479,367 | $408,498 | $381,512 | XML |
| 990 | December 2022 | $416,334 | $300,088 | $309,953 | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2019 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 26-4826165).
Questions about NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTONS DISEASE INC
- What is the EIN of NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTONS DISEASE INC?
- The employer identification number (EIN) of NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTONS DISEASE INC is 26-4826165.
- Is NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTONS DISEASE INC tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2009.
- Are donations to NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTONS DISEASE INC tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTONS DISEASE INC file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTONS DISEASE INC due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTONS DISEASE INC last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTONS DISEASE INC?
- The 990 for the year ended December 31, 2025 names ANTHONY MARTINEZ.
- Who are the officers and directors of NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTONS DISEASE INC?
- The 990 for the year ended December 31, 2025 lists 10 people; 0 received compensation from the organization.
- How much revenue does NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTONS DISEASE INC have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $407,798, expenses of $404,755 and total assets of $409,988 at year end.
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All nonprofits in CARY · North Carolina · Community improvement and capacity building