North Carolina · Nonprofit
NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC
NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC (North Carolina) receives grants from 10 organizations whose IRS filings report $532,701 to it, the largest being THE GRIFFIN FOUNDATION INC ($220,000). 6 of them have funded it in more than one year, and 58% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $408k
- Funders on record
- 10
- Grants received
- $533k
- Net assets
- $406k
What North Carolina Center for the Care of Huntington's Disease Inc does
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.
As stated on its FY2025 Form 990.
Programs
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.
$42,534 spent$1,476 earned by the program14% of program spendingOutreach 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
$127,601 spent$4,428 earned by the program42% of program spendingEducation 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.
$89,020 spent$2,460 earned by the program30% of program spendingEducation 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: 2
$42,530 spent$1,476 earned by the program14% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $301,685.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2021 to 2022, from $196k to $310k (+58%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
94% of NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC’s revenue is contributions — more donation-reliant than the typical peer (62% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 9 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Board chair
Anthony Martinez
Chair
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 1 funder to 4 funders, grant income rose $16k → $33k.
5 of 10 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 58% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC leans on a few funders — its largest provides 41% of grant income and the top three 93%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
58% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC.
Largest funder’s share by year: 2017 100% · 2018 74% · 2019 89% · 2020 97% · 2021 99% · 2022 77% · 2023 80% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
33% of NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC's funders are still giving 3 years after their first grant; 60% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
58% of NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $222k that is directly attributable, 99% of it comes from funders outside North Carolina, across 4 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $311k arriving through sponsors registered in 5 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC has grown faster than half of the 7,175 community improvement nonprofits its size.
this organization peer median middle 50% of peers· 7,175 community improvement nonprofits $100k–$1M, FY2025
Organizations like NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In North Carolina
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
75% of spending goes to programs.
Governance
Public support
52%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Screen this organization
A dated, signed PDF of the compliance screen for NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC?
- NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC (North Carolina) receives grants from 10 organizations whose IRS filings report $532,701 to it, the largest being THE GRIFFIN FOUNDATION INC ($220,000). 6 of them have funded it in more than one year, and 58% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC have?
- IRS filings report 10 organizations giving $532,701 in grants to NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC, 6 of which have funded it in more than one year.
- Who is the largest funder of NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC?
- THE GRIFFIN FOUNDATION INC is the largest funder on record, with $220,000 in grants. The full list of funders is on this page.
- How can an organization like NORTH CAROLINA CENTER FOR THE CARE OF HUNTINGTON'S DISEASE INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in North Carolina. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
Play a game about who funds North Carolina Center for the Care of Huntington's Disease →
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2017–2025), and the filings of 10 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing