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Nonprofiteer
← NATIONAL FRAGILE X FOUNDATION

Form 990 for tax year 2023

Filed by NATIONAL FRAGILE X FOUNDATION.

Totals

Total revenue
$1,802,073
Total expenses
$1,800,882
Contributions and grants received
$1,507,800
Grants paid
$159,325
Program service revenue
$252,970
Investment income
$47,771
Other revenue
-$6,468
Total assets, end of year
$3,572,020
Total liabilities, end of year
$1,081,559
Net assets or fund balances, end of year
$2,490,461
Program services expenses (Part IX)
$1,345,361
Management and general expenses
$287,558
Fundraising expenses
$167,963
Program service expenses (Part III)
$1,345,361

Program services were 74.7% 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

    $72,124

  • 1f · All other contributions, gifts and grants

    $1,435,676

  • 2a · Program service revenue: SERVICE FEES

    total $252,838 · related or exempt $252,838

  • 2b · Program service revenue: OTHER PROGRAM REVENUE

    total $132 · related or exempt $132

  • 3 · Investment income

    total $48,081 · excluded $48,081

  • 7a · Gross sales of assets other than inventory

    securities $271,207

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

    securities $271,517

  • 7c · Gain or loss

    securities -$310

  • 7d · Net gain or loss

    total -$310 · excluded -$310

  • 8a · Fundraising events: gross income

    $0

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

    $72,124

  • 8b · Fundraising events: direct expenses

    $6,468

  • 8c · Net income from fundraising events

    total -$6,468 · excluded -$6,468

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $129,362 · program services $129,362

  • 2 · Grants to domestic individuals

    total $29,963 · program services $29,963

  • 5 · Compensation of officers, directors and key employees

    total $149,120 · program services $119,296 · management and general $14,912 · fundraising $14,912

  • 7 · Other salaries and wages

    total $485,662 · program services $345,359 · management and general $59,876 · fundraising $80,427

  • 9 · Other employee benefits

    total $50,891 · program services $37,199 · management and general $6,010 · fundraising $7,682

  • 10 · Payroll taxes

    total $53,538 · program services $39,185 · management and general $6,309 · fundraising $8,044

  • 11d · Fees: lobbying

    total $60,000 · program services $60,000

  • 11g · Fees: other

    total $463,865 · program services $375,699 · management and general $80,710 · fundraising $7,456

  • 12 · Advertising and promotion

    total $30,773 · program services $7,747 · management and general $84 · fundraising $22,942

  • 13 · Office expenses

    total $25,365 · program services $20,155 · management and general $5,119 · fundraising $91

  • 14 · Information technology

    total $26,296 · program services $7,376 · management and general $7,880 · fundraising $11,040

  • 17 · Travel

    total $26,220 · program services $6,483 · management and general $19,448 · fundraising $289

  • 19 · Conferences, conventions and meetings

    total $51,071 · program services $37,064 · management and general $14,007

  • 22 · Depreciation, depletion and amortization

    total $1,045 · management and general $1,045

  • 23 · Insurance

    total $14,739 · management and general $14,739

  • 24a · Other expenses: CLINIC COMPENSATION

    total $117,646 · program services $117,646

  • 24b · Other expenses: BAD DEBTS

    total $25,750 · management and general $25,750

  • 24c · Other expenses: BANK AND CREDIT CARD FE

    total $14,894 · program services $1,525 · management and general $707 · fundraising $12,662

  • 24d · Other expenses: CSN GROUPS

    total $9,451 · program services $9,451

  • 24e · All other expenses

    total $35,231 · program services $1,851 · management and general $30,962 · fundraising $2,418

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $2,111,774 · end of year $2,630,834

  • 2 · Savings and temporary cash investments

    beginning of year $251,926 · end of year $0

  • 3 · Pledges and grants receivable

    beginning of year $109,508 · end of year $22,228

  • 9 · Prepaid expenses and deferred charges

    beginning of year $14,298 · end of year $17,318

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

    $110,189

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

    $59,037

  • 10c · Land, buildings and equipment, net

    beginning of year $1,552 · end of year $51,152

  • 11 · Investments: publicly traded securities

    beginning of year $286,131 · end of year $850,488

  • 17 · Accounts payable and accrued expenses

    beginning of year $76,158 · end of year $101,570

  • 19 · Deferred revenue

    beginning of year $88,694 · end of year $979,989

  • 24 · Unsecured notes and loans payable

    beginning of year $139,543 · end of year $0

  • 25 · Other liabilities

    beginning of year $154 · end of year $0

  • 27 · Net assets without donor restrictions

    beginning of year $2,323,178 · end of year $2,387,741

  • 28 · Net assets with donor restrictions

    beginning of year $147,462 · end of year $102,720

Mission and programs · 2023

Mission

THE NATIONAL FRAGILE X FOUNDATION UNITES THE FRAGILE X COMMUNITY TO ENRICH LIVES THROUGH EDUCATIONAL AND EMOTIONAL SUPPORT, PROMOTES PUBLIC AND PROFESSIONAL AWARENESS, AND ADVANCES RESEARCH TOWARD IMPROVED TREATMENTS AND A CURE FOR FRAGILE X.

Activities or mission (Part I)

TO PROVIDE UNWAVERING SUPPORT FOR EVERY FAMILY AFFECTED BY FRAGILE X WHILE RELENTLESSLY PURSUING A CURE.

  • EDUCATION AND SUPPORT - THE NFXF PROVIDES PERSONALIZED SUPPORT, RESOURCES AND REFERRALS TO INDIVIDUALS AND FAMILIES ON THE MULTITUDE OF ISSUES THEY FACE, INCLUDING DIAGNOSIS, GENETICS, BEHAVIOR, TREATMENTS, EDUCATIONAL PLANNING, EMPLOYMENT AND ADULT ISSUES. THE NFXF ORGANIZES EDUCATIONAL CONENT INCLUDING RESOURCES, WEBINARS, VIRUTAL EVENTS, AND EDUCATIONAL CONFERENCES FOR FAMILIES AND PROFESSIONALS ABOUT FRAGILE X SYNDROME AND THE ASSOCIATED CONDITIONS AND DISORDERS TO PROVIDE HOPE AND HELP FAMILIES OVERCOME THE DAILY CHALLENGES OF LIVING WITH FX.

    Expenses $298,799 · Revenue $132

  • RESEARCH GRANTS - THE NFXF FACILITATES SEVERAL MAJOR RESEARCH STRATEGIES. THE NFXF DATA REPOSITORY, WHICH LEVERAGES PREVIOUSLY COLLECTED DATA FOR NEW PROOF-OF-CONCEPT DRUG TREAMTENT, OUTCOME MEASURE DEVELOPMENT, AND OTHER MEANINGFUL SCIENTIFIC WORK. THE NFXF ALSO FUNDS SUMMER SCHOLAR RESEARCH AWARDS TO PROMOTE THE DEVELOPMENT OF YOUNGER SCIENTISTS IN THE FIELD. THE NFXF ALSO ENABLES A RESEARCH READINESS PROGRAM, A COLLABORATIVE PIPELINE SUPPORTING THE DEVELOPMENT AND EXECUTION OF SCIENTIFICALLY-SOUND, RELEVANT, PATIENT-CENTRIC RESEARCH FROM INITIAL PROGRAM DEVELOPMENT THROUGH RESULTS DISSEMINATION.

    Expenses $947,056 · Grants $159,325 · Revenue $252,838

  • ADVOCACY - THE NFXF ORGANIZES AND SUPPORTS A VARIETY OF PERSONAL AND LEGISLATIVE ADVOCACY INITIATIVES. THIS INCLUDES THE VIBRANT AND DEDICATED NETWORK OF VOLUNTEER-LED CHAPTERS ACROSS THE U.S., THE COMMUNITY SUPPORT NETWORK, THESE CHAPTERS DELIVER THE NFXF MISSION ON A LOCAL LEVEL. THE NFXF FACILITATES A YEAR-ROUND LEGISLATIVE ADVOCACY PROGRAM THAT INCLUES AN ANNUAL FLY IN FOR FAMILIES LIVING WITH FRAGILE X TO ADVOCATE FOR RESEARCH FUNDIN-G FOR FRAGILE X AND LEGISLATION THAT POSITIVELY IMPACTS THE COMMUNITY.

    Expenses $99,506

As filed on the 2023 return.

Listed in Part VII

  • Laurie Bridges

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    2

  • Kara Frech

    BOARD VICE-PRESIDENT

    Total calculated
    $0
    Hours/week
    2

  • Anthony Fasciano

    BOARD TREASURER

    Total calculated
    $0
    Hours/week
    1

  • Abby Gaurnt

    BOARD SECRETARY

    Total calculated
    $0
    Hours/week
    2

  • Joe Garera

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Denny Haugen

    BOARD SECRETARY

    Total calculated
    $0
    Hours/week
    2

  • Reymundo Lozano

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Jed Seifert

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Rebecca Schaeffer

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Shari Silver

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Victoria Wilkin

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Tamaro Hudson

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • David Tillman

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Jacquelyn Coleman

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Susan Howell

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    40

  • Peggy Flanagan

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    0

  • Hilary Rosselot

    EXECUTIVE DIRECTOR

    Total calculated
    $168,407
    From this org
    $149,120
    From related orgs
    $0
    Other
    $19,287
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $149,120
    Bonus
    $0
    Other
    $0
    Deferred
    $19,287
    Nontaxable benefits
    $0
    Filer's total
    $168,407

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

None.

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

Provenance

Return type
form_990
Tax year
2023
Filed
24 June 2024
IRS schema version
2023v5.1
Source object
202441769349300304

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