Form 990 for tax year 2024
Filed by HUNTINGTONS DISEASE SOCITEY OF AMERICA GROUP RETURN.
Totals
- Total revenue
- $3,205,651
- Total expenses
- $3,477,679
- Contributions and grants received
- $3,205,417
- Grants paid
- $12,638
- Program service revenue
- $0
- Investment income
- $0
- Other revenue
- $234
- Total assets, end of year
- $610,639
- Total liabilities, end of year
- $22,163
- Net assets or fund balances, end of year
- $588,476
- Program services expenses (Part IX)
- $3,221,813
- Management and general expenses
- $223
- Fundraising expenses
- $255,643
- Program service expenses (Part III)
- $3,221,813
Program services were 92.6% 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.
-
1a · Federated campaigns
$56,168
-
1c · Fundraising events
$2,305,996
-
1f · All other contributions, gifts and grants
$843,253
-
1g · Noncash contributions included above
$143,242
-
8a · Fundraising events: gross income
$384,249
-
8a · Fundraising events: contributions included on line 1c
$2,305,996
-
8b · Fundraising events: direct expenses
$384,249
-
8c · Net income from fundraising events
total $0
-
11a · Other revenue: MISCELLANEOUS
total $234 · excluded $234
-
11e · Other revenue, total
$234
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $12,638 · program services $12,638
-
11g · Fees: other
total $920 · program services $880 · fundraising $40
-
13 · Office expenses
total $31,489 · program services $26,552 · fundraising $4,937
-
16 · Occupancy
total $2,580 · program services $2,580
-
19 · Conferences, conventions and meetings
total $97,463 · program services $91,805 · fundraising $5,658
-
21 · Payments to affiliates
total $2,693,053 · program services $2,693,053
-
22 · Depreciation, depletion and amortization
total $300 · program services $300
-
23 · Insurance
total $445 · program services $384 · fundraising $61
-
24a · Other expenses: BANK AND CREDIT CARD FE
total $59,438 · program services $311 · fundraising $59,127
-
24b · Other expenses: PRINTING & PUBLICATIONS
total $34,423 · program services $5,414 · fundraising $29,009
-
24c · Other expenses: POSTAGE AND SHIPPING
total $21,704 · program services $6,015 · fundraising $15,689
-
24d · Other expenses: TELEPHONE
total $4,585 · program services $4,520 · management and general $65
-
24e · All other expenses
total $518,641 · program services $377,361 · management and general $158 · fundraising $141,122
Balance sheet
Part X, book values.
-
2 · Savings and temporary cash investments
beginning of year $821,471 · end of year $580,653
-
3 · Pledges and grants receivable
beginning of year $53,062 · end of year $4,500
-
9 · Prepaid expenses and deferred charges
beginning of year $14,869 · end of year $24,761
-
10a · Land, buildings and equipment: cost or other basis
$1,500
-
10b · Land, buildings and equipment: accumulated depreciation
$775
-
10c · Land, buildings and equipment, net
beginning of year $1,025 · end of year $725
-
17 · Accounts payable and accrued expenses
beginning of year $28,624 · end of year $21,169
-
19 · Deferred revenue
beginning of year $1,299 · end of year $994
-
27 · Net assets without donor restrictions
beginning of year $737,522 · end of year $455,277
-
28 · Net assets with donor restrictions
beginning of year $122,982 · end of year $133,199
Mission and programs · 2024
Mission
HUNTINGTON'S DISEASE SOCIETY OF AMERICA, INC. IS A HEALTH AND WELFARE ORGANIZATION DEDICATED TO IMPROVING THE LIVES OF PEOPLE WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES
Activities or mission (Part I)
DEDICATED TO IMPROVING THE LIVES OF PEOPLE WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES.
-
PATIENT AND FAMILY SERVICES - PROVIDES COUNSELING AND REFERRAL SERVICES TO PATIENTS WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES.
Expenses $3,037,638 · Grants $12,638
-
COMMUNITY OUTREACH - PROVIDES WORKSHOPS, SEMINARS, AND SYMPOSIUMS ON HUNTINGTON'S DISEASE THROUGH A NETWORK OF CHAPTER AFFILIATES AND BRANCHES THROUGHOUT THE UNITED STATES.
Expenses $107,757
-
EDUCATION - PROVIDES INFORMATION AND EDUCATION THROUGH PUBLICATION AND DISTRIBUTION OF NEWSLETTERS, BROCHURES AND SCIENCE UPDATES.
Expenses $76,418
As filed on the 2024 return.
Listed in Part VII
-
VICTOR SUNG MD
PAST CHAIR
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
TERESA SRAJER
CHAIR
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
ANGELA ALLEN
TREASURER
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
JENNE COLER-DARK
CHAIR ELECT
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
JAY HUGHES
SECRETARY
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
KAMRAN ALAM
TRUSTEE
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
JEFFREY BROWN
TRUSTEE
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
JEFF CARROLL
TRUSTEE
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
MARK COE
TRUSTEE
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
ERIN FURR-STIMMING MD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
BETH HOFFMAN
TRUSTEE
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
JONATHAN KLEIN ESQ
TRUSTEE
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
KELSEY PORTER
TRUSTEE (THRU 6/2024)
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
DOMINIQUE THOMAS
TRUSTEE
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
LESLIE M THOMPSON PHD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
VICKI WHEELOCK MD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
AMBER SOUTHWELL PHD
TRUSTEE
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
CHRISTOPHER DECESARIS
TRUSTEE
- Total calculated
- $0
- Hours/week
- 6 + 3 related
-
LOUISE VETTER
CHIEF EXECUTIVE OFF (THRU 7/12/2024)
- Total calculated
- $316,136
- From this org
- $281,981
- From related orgs
- $0
- Other
- $34,155
- Hours/week
- 35 + 3 related
Schedule J breakdown matched by us
- Base
- $281,981
- Bonus
- $0
- Other
- $0
- Deferred
- $11,931
- Nontaxable benefits
- $22,224
- Filer's total
- $316,136
-
ROSEMARY COLUCCIO
CHIEF OPERATIONS OFFICER
- Total calculated
- $318,209
- From this org
- $286,482
- From related orgs
- $0
- Other
- $31,727
- Hours/week
- 35 + 3 related
Schedule J breakdown matched by us
- Base
- $286,482
- Bonus
- $0
- Other
- $0
- Deferred
- $14,479
- Nontaxable benefits
- $17,248
- Filer's total
- $318,209
-
ARIK JOHNSON
CHIEF MISSION OFFICER
- Total calculated
- $232,842
- From this org
- $218,271
- From related orgs
- $0
- Other
- $14,571
- Hours/week
- 35 + 3 related
Schedule J breakdown matched by us
- Base
- $218,271
- Bonus
- $0
- Other
- $0
- Deferred
- $10,913
- Nontaxable benefits
- $3,658
- Filer's total
- $232,842
-
JAMISON SKALA
DIRECTOR, NATIONAL DEVELOPMENT
- Total calculated
- $204,167
- From this org
- $190,938
- From related orgs
- $0
- Other
- $13,229
- Hours/week
- 35 + 3 related
Schedule J breakdown matched by us
- Base
- $190,938
- Bonus
- $0
- Other
- $0
- Deferred
- $9,734
- Nontaxable benefits
- $3,495
- Filer's total
- $204,167
-
DEBORAH BOYD
REGIONAL DEVELOPMENT DIRECTOR
- Total calculated
- $142,715
- From this org
- $120,084
- From related orgs
- $0
- Other
- $22,631
- Hours/week
- 35 + 3 related
-
REBECCA CHAN
CONTROLLER
- Total calculated
- $164,557
- From this org
- $120,050
- From related orgs
- $0
- Other
- $44,507
- Hours/week
- 35 + 3 related
Schedule J breakdown matched by us
- Base
- $120,050
- Bonus
- $0
- Other
- $0
- Deferred
- $6,742
- Nontaxable benefits
- $37,765
- Filer's total
- $164,557
-
JESSICA MARSOLEK
ASSISTANT DIRECTOR, MISSION PROGRAMS
- Total calculated
- $131,516
- From this org
- $111,772
- From related orgs
- $0
- Other
- $19,744
- Hours/week
- 35 + 3 related
-
NICHOLE MENDOZA
REGIONAL DEVELOPMENT OFFICER PACIFIC WEST
- Total calculated
- $124,153
- From this org
- $102,612
- From related orgs
- $0
- Other
- $21,541
- Hours/week
- 35 + 3 related
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. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.
Schedule J
Answered yes
- 3 · Form 990 of other organizations
- 3 · Written employment contract
- 3 · Compensation survey or study
- 3 · Approval by the board or compensation committee
Answered no
- 4a · Severance or change-of-control payment
- 4b · Supplemental nonqualified retirement plan
- 4c · Equity-based compensation arrangement
- 5a · Pay contingent on this organization's revenues
- 5b · Pay contingent on a related organization's revenues
- 6a · Pay contingent on this organization's net earnings
- 6b · Pay contingent on a related organization's net earnings
- 7 · Other non-fixed payments
- 8 · Paid under the initial-contract exception
The filer's explanations (Part III)
- PART I, LINE 3
- COMPENSATION PRACTICES - PAID BY RELATED ORGANIZATION: COMPENSATION IS DETERMINED BY A COMBINATION OF A REVIEW AND APPROVAL BY INDEPENDENT PERSONS, COMPARABILITY DATA, AND CONTEMPORANEOUS SUBSTANTIATION OF THE DELIBERATION AND DECISION BY THE BOARD.
Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.
Grants on this return
No itemized grants to organizations on this return.
Related organizations on this return
Schedule R Part II: tax-exempt organizations related to the filer by control. It does not record shared board members or money.
-
HUNTINGTON'S DISEASE SOCIETY OF AMERICA
501(C)(3) · PROG SRVC · NY
Provenance
- Return type
- form_990
- Tax year
- 2024
- Filed
- 28 October 2025
- IRS schema version
- 2024v5.2
- Source object
- 202543019349300804
Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.
The source document this was parsed from is served over the API, which is where bulk and document access live.