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Huntingtons Disease Youth Organization of America

EIN 45-4955538 · Livonia, MI

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthStrong95 out of 100GovernanceStrong91 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

THE HUNTINGTON'S DISEASE YOUTH ORGANIZATION OF AMERICA IS A NON-PROFIT ORGANIZATION SET UP TO SPECIFICALLY PROVIDE SUPPORT FOR YOUNG PEOPLE AROUND THE WORLD IMPACTED BY HUNTINGTON'S DISEASE. THE ORGANIZATION PROVIDES SUPPORT, EDUCATION AND GUIDANCE TO YOUNG PEOPLE AND THEIR FAMILIES IMPACTED BY HUNTINGTON'S DISEASE AND PROMOTES AWARENESS AND PROVIDES EDUCATION WITHIN PROFESSIONAL SETTINGS FOR THOSE WORKING WITH HUNTINGTON'S DISEASE FAMILIES.

Income
$415,962
Spending
$348,585
Spent on programs
94%
Reserves
14.6 months of spending
Largest source of income
donations and private grants, 100%
Employees
0
Volunteers
25
Highest pay
$110,000, executive director

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 95 out of 100. Higher than 78% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover 14.6 months of spending.

  • Debt

    20 of 20

    It owes 0% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 16% of income.

  • Income trend

    10 of 15

    Income fell 3% on the year before.

  • Spending floor

    15 of 15

    94% of spending went to programs and raising each dollar of donations cost 0 cents.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 91 out of 100. Higher than 73% of charities in its peer group (diseases, $250k to $1m).

  • Independent board

    25 of 25

    8 of 8 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    6 of 15

    Its accounts were not audited or reviewed by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $33,315 spent. YOUNG ADULT CONGRESS EVENT: INTERNATIONAL YOUNG ADULT EVENT FOR SUPPORT AND EDUCATION.
  2. $72,064 spent. HDYO CAMP - CAMP OFFERS YOUNG PEOPLE THE CHANCE TO MEET OTHERS IMPACTED BY HD TO LEARN ABOUT HD THROUGH EDUCATIONAL WORKSHOPS, SHARE EXPERIENCES AND ALSO HAVE PLENTY OF FUN PARTICIPATING IN THE MANY ON-SITE ACTIVITIES LIKE SWIMMING, ROCK CLIMBING, HIKING, ARCHERY AND MUCH MORE. THIS WAS HOSTED AT CAMP ST. CHARLES IN MARYLAND. WE WELCOMED 34 CAMPERS AND 26 VOLUNTEERS FOR 5 DAYS OF INTENSE SUPPORT AND COMMUNITY BUILDING. THIS WAS HELD ON AUGUST 11-15.
  3. $20,000 spent. HDYO UK GRANT SUPPORT: HDYO OF AMERICA SUPPORTED OUR SISTER ORGANIZATION, ALSO KNOWN AS HDYO, REGISTERED AS A CHARITY UNDER THE UNITED KINGDOM CHARITY COMISSION. OUR GRANTS PROVIDED FUNDS FOR THE CREATION AND SHARING OF JOINT RESOURCES INCLUDING A WEBSITE, BROCHURES, EDUCATIONAL PROGRAMS, AND MUCH MORE. OUR SISTER ORGANIZATION WORKS INSYNC WITH HDYO-AMERICA TO COMBINE OUR EFFORTS TO PROVIDE THE BEST SUPPORT POSSIBLE FOR ALL YOUNG PEOPLE AROUND THE WORLD IMPACTED BY HD.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated September 30, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated September 10, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2024.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since March 2014.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 7, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.