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Nonprofiteer
← CITIZENS UNITED FOR RESEARCH IN EPILEPSY

Form 990 for tax year 2022

Filed by CITIZENS UNITED FOR RESEARCH IN EPILEPSY.

Totals

Total revenue
$6,231,376
Total expenses
$5,793,113
Contributions and grants received
$5,937,146
Grants paid
$2,804,485
Program service revenue
$0
Investment income
$846,777
Other revenue
-$552,547
Total assets, end of year
$10,154,743
Total liabilities, end of year
$4,004,057
Net assets or fund balances, end of year
$6,150,686
Program services expenses (Part IX)
$5,007,708
Management and general expenses
$324,474
Fundraising expenses
$460,931
Program service expenses (Part III)
$5,007,708

Program services were 86.4% 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.

  • 1c · Fundraising events

    $2,638,271

  • 1e · Government grants (contributions)

    $538,439

  • 1f · All other contributions, gifts and grants

    $2,760,436

  • 1g · Noncash contributions included above

    $772,767

  • 3 · Investment income

    total $140,351

  • 7a · Gross sales of assets other than inventory

    securities $3,610,814

  • 7b · Less cost or other basis and sales expenses

    securities $2,904,388

  • 7c · Gain or loss

    securities $706,426

  • 7d · Net gain or loss

    total $706,426

  • 8a · Fundraising events: gross income

    $60,150

  • 8a · Fundraising events: contributions included on line 1c

    $2,638,271

  • 8b · Fundraising events: direct expenses

    $612,697

  • 8c · Net income from fundraising events

    total -$552,547

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $2,155,773 · program services $2,155,773

  • 2 · Grants to domestic individuals

    total $0

  • 3 · Grants to foreign organizations and individuals

    total $648,712 · program services $648,712

  • 4 · Benefits paid to or for members

    total $0

  • 5 · Compensation of officers, directors and key employees

    total $1,276,512 · program services $923,032 · management and general $148,076 · fundraising $205,404

  • 6 · Compensation of disqualified persons

    total $0

  • 7 · Other salaries and wages

    total $555,921 · program services $304,794 · management and general $71,591 · fundraising $179,536

  • 8 · Pension plan contributions

    total $0

  • 9 · Other employee benefits

    total $221,020 · program services $148,880 · management and general $25,909 · fundraising $46,231

  • 10 · Payroll taxes

    total $120,754 · program services $79,565 · management and general $15,923 · fundraising $25,266

  • 11a · Fees: management

    total $0

  • 11b · Fees: legal

    total $0

  • 11c · Fees: accounting

    total $26,592 · program services $23,085 · management and general $3,507

  • 11d · Fees: lobbying

    total $0

  • 11f · Fees: investment management

    total $15,951 · management and general $15,951

  • 11g · Fees: other

    total $43,726 · program services $42,422 · management and general $1,304

  • 12 · Advertising and promotion

    total $0

  • 13 · Office expenses

    total $61,189 · program services $53,569 · management and general $7,620

  • 14 · Information technology

    total $126,590 · program services $118,522 · management and general $8,068

  • 15 · Royalties

    total $0

  • 16 · Occupancy

    total $81,386 · program services $69,027 · management and general $12,359

  • 17 · Travel

    total $39,882 · program services $34,652 · management and general $5,230

  • 18 · Travel or entertainment for public officials

    total $0

  • 19 · Conferences, conventions and meetings

    total $58,870 · program services $58,870

  • 20 · Interest

    total $0

  • 21 · Payments to affiliates

    total $0

  • 22 · Depreciation, depletion and amortization

    total $20,997 · program services $13,997 · management and general $2,506 · fundraising $4,494

  • 23 · Insurance

    total $10,935 · program services $9,274 · management and general $1,661

  • 24a · Other expenses: Advocacy and Awareness

    total $296,901 · program services $296,901

  • 24b · Other expenses: Other Expenses

    total $18,321 · program services $15,538 · management and general $2,783

  • 24c · Other expenses: State registrations

    total $9,951 · program services $8,440 · management and general $1,511

  • 24d · Other expenses: Supplies

    total $3,130 · program services $2,655 · management and general $475

  • 24e · All other expenses

    total $0

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $3,228,731 · end of year $814,141

  • 2 · Savings and temporary cash investments

    beginning of year $7,987

  • 3 · Pledges and grants receivable

    beginning of year $1,254,046 · end of year $635,571

  • 9 · Prepaid expenses and deferred charges

    beginning of year $42,012 · end of year $41,357

  • 10a · Land, buildings and equipment: cost or other basis

    $271,418

  • 10b · Land, buildings and equipment: accumulated depreciation

    $211,495

  • 10c · Land, buildings and equipment, net

    beginning of year $54,310 · end of year $59,923

  • 11 · Investments: publicly traded securities

    beginning of year $5,899,366 · end of year $8,153,627

  • 15 · Other assets

    beginning of year $10,000 · end of year $450,124

  • 17 · Accounts payable and accrued expenses

    beginning of year $187,023 · end of year $143,881

  • 18 · Grants payable

    beginning of year $2,145,433 · end of year $3,045,280

  • 19 · Deferred revenue

    beginning of year $792,257 · end of year $316,546

  • 25 · Other liabilities

    end of year $498,350

  • 27 · Net assets without donor restrictions

    beginning of year $6,049,122 · end of year $5,094,243

  • 28 · Net assets with donor restrictions

    beginning of year $1,322,617 · end of year $1,056,443

Mission and programs · 2022

Mission

To find a cure for epilepsy by promoting and funding patient focused research.

  • Since its inception in 1998, CURE Epilepsy has raised more than 90 million to fund epilepsy research and other initiatives that will lead the way to cures for the epilepsies. CURE Epilepsy awards grants for novel research projects to prevent epilepsy related to pediatric epilepsy, post-traumatic epilepsy, treatment resistant epilepsies, sudden unexplained death in epilepsy SUDEP, and sleep and epilepsy advancing the search for a cure, eliminating treatment side effects, and reversing deficits caused by frequent seizures, CURE Epilepsy funds grants for young and established investigators and todate has awarded more than 280 grants in 17 countries around the world.

    Expenses $3,943,069

  • CURE Epilepsy believes that awareness is a critical vehicle to increase the amount of funding for epilepsy research and to share key learnings and opportunities for those impacted by epilepsy. CURE Epilepsy creates, sponsors and levers our website, webinars, seminars, podcasts, educational events and other digital communication to drive this critical awareness.

    Expenses $1,064,639

As filed on the 2022 return.

Listed in Part VII

  • Beth Dean

    CEO

    Total calculated
    $336,051
    From this org
    $299,086
    From related orgs
    $0
    Other
    $36,965
    Hours/week
    37.5

    Schedule J breakdown matched by us

    Base
    $271,073
    Bonus
    $28,013
    Other
    not reported
    Deferred
    $9,175
    Nontaxable benefits
    $27,790
    Filer's total
    $336,051

  • Laura Lubbers

    Chief Scientific Officer

    Total calculated
    $312,430
    From this org
    $295,325
    From related orgs
    $0
    Other
    $17,105
    Hours/week
    37.5

    Schedule J breakdown matched by us

    Base
    $267,555
    Bonus
    $27,770
    Other
    not reported
    Deferred
    $8,915
    Nontaxable benefits
    $8,190
    Filer's total
    $312,430

  • Debby Hecht

    Sr. Director, Market Coms

    Total calculated
    $169,053
    From this org
    $162,707
    From related orgs
    $0
    Other
    $6,346
    Hours/week
    37.5

    Schedule J breakdown matched by us

    Base
    $162,707
    Bonus
    not reported
    Other
    not reported
    Deferred
    $4,887
    Nontaxable benefits
    $1,459
    Filer's total
    $169,053

  • Alysha Biehl

    Sr. Director Development

    Total calculated
    $163,710
    From this org
    $149,182
    From related orgs
    $0
    Other
    $14,528
    Hours/week
    37.5

    Schedule J breakdown matched by us

    Base
    $149,182
    Bonus
    not reported
    Other
    not reported
    Deferred
    $4,546
    Nontaxable benefits
    $9,982
    Filer's total
    $163,710

  • Priya Balasubramanian

    Assoc Director of Research

    Total calculated
    $140,067
    From this org
    $115,032
    From related orgs
    $0
    Other
    $25,035
    Hours/week
    37.5

  • John Anderluh

    CFO

    Total calculated
    $138,086
    From this org
    $110,734
    From related orgs
    $0
    Other
    $27,352
    Hours/week
    37.5

  • Lauren Harte-Hargrove

    DOD, Assoc Director of Res

    Total calculated
    $124,801
    From this org
    $120,690
    From related orgs
    $0
    Other
    $4,111
    Hours/week
    37.5

  • Kelly Cervantes

    Chair

    Total calculated
    $0
    Hours/week
    4

  • Lisa Cotton

    Chair Elect

    Total calculated
    $0
    Hours/week
    3

  • Shalee Cunneen

    Secretary

    Total calculated
    $0
    Hours/week
    3

  • Kathy McKenna

    Treasurer

    Total calculated
    $0
    Hours/week
    4

  • Steve Austin

    Director

    Total calculated
    $0
    Hours/week
    2

  • Mike Axelrod

    Director

    Total calculated
    $0
    Hours/week
    2

  • Kim Borden

    Director

    Total calculated
    $0
    Hours/week
    2

  • Marilynn Gardner

    Director

    Total calculated
    $0
    Hours/week
    2

  • Carrie Garman

    Director

    Total calculated
    $0
    Hours/week
    2

  • Justin Gover

    Director

    Total calculated
    $0
    Hours/week
    2

  • David Reifman

    Director

    Total calculated
    $0
    Hours/week
    2

  • Tina Sacks

    Director

    Total calculated
    $0
    Hours/week
    2

  • Matt Schneider

    Director

    Total calculated
    $0
    Hours/week
    3

  • Hannah Whitten

    Director

    Total calculated
    $0
    Hours/week
    2

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 · Compensation committee
  • 3 · Independent compensation consultant
  • 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

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

The 10 largest by cash amount. The API serves every itemized grant.

Provenance

Return type
form_990
Tax year
2022
Filed
2 May 2023
IRS schema version
2022v5.0
Source object
202341229349300214

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

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