Totals
- Total revenue
- $735,527
- Total expenses
- $1,323,859
- Contributions and grants received
- $694,492
- Grants paid
- $385,588
- Program service revenue
- $0
- Investment income
- $41,035
- Other revenue
- $0
- Total assets, end of year
- $1,367,619
- Total liabilities, end of year
- $354,521
- Net assets or fund balances, end of year
- $1,013,098
- Program services expenses (Part IX)
- $1,253,690
- Management and general expenses
- $64,371
- Fundraising expenses
- $5,798
- Program service expenses (Part III)
- $1,253,690
Program services were 94.7% 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
$47,044
-
1f · All other contributions, gifts and grants
$647,448
-
3 · Investment income
total $41,035 · excluded $41,035
-
8a · Fundraising events: gross income
$4,012
-
8a · Fundraising events: contributions included on line 1c
$47,044
-
8b · Fundraising events: direct expenses
$4,012
-
8c · Net income from fundraising events
total $0
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $385,588 · program services $385,588
-
11b · Fees: legal
total $38,715 · management and general $38,715
-
11c · Fees: accounting
total $9,655 · management and general $9,655
-
11g · Fees: other
total $716,925 · program services $716,925
-
12 · Advertising and promotion
total $5,538 · fundraising $5,538
-
13 · Office expenses
total $414 · management and general $414
-
14 · Information technology
total $4,034 · management and general $4,034
-
19 · Conferences, conventions and meetings
total $151,177 · program services $151,177
-
24a · Other expenses: BANK FEES
total $7,305 · management and general $7,305
-
24b · Other expenses: PROFESSIONAL ORGANIZATI
total $2,116 · management and general $2,116
-
24c · Other expenses: MISCELLANEOUS
total $1,914 · management and general $1,914
-
24d · Other expenses: COMPLIANCE FEES
total $478 · management and general $218 · fundraising $260
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $1,648,170 · end of year $1,337,910
-
4 · Accounts receivable
beginning of year $44,232 · end of year $26,405
-
9 · Prepaid expenses and deferred charges
beginning of year $8,990 · end of year $3,304
-
17 · Accounts payable and accrued expenses
beginning of year $99,962 · end of year $349,521
-
19 · Deferred revenue
end of year $5,000
-
27 · Net assets without donor restrictions
beginning of year $1,601,430 · end of year $1,013,098
Mission and programs · 2023
Mission
TO CREATE AWARENESS IN THE DISORDERS ASSOCIATED WITH STXBP1 MUTATIONS. FUND AND DRIVE RESEARCH DISCOVERY OF A CURE. PROVIDE FAMILIES WITH TOOLS TO HELP THEM UNDERSTAND THE DISEASE & HOW TO GET INVOLVED. ADVOCATE TO IMPROVE EARLY DETECTION. FOSTER ACTIVISM TO HELP CHANGE POLICIES IN FAVOR OF ORPHANED DISEASES. IMPROVE THE LIVES OF OUR STXBP1 FAMILIES.
-
FUNDED MULTIPLE PRECLINICAL GRANTS TO VARIOUS ORGANIZATIONS TO FURTHER RESEARCH AROUND STXBP1
Expenses $362,118 · Grants $385,588 · Revenue $494,159
-
HOSTED IN PERSON STXBP1 SUMMIT+ TO UPDATE FAMILIES ON CURRENT RESEARCH AS WELL AS PROVIDE ADDITIONAL RESOURCES TO BE USED IN EVERYDAY LIFE
Expenses $141,730
-
LAUNCHED A LONGITUDINAL MULTI SITE NATURAL HISTORY STUDY FOR PATIENTS.
Expenses $749,842
As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.
Listed in Part VII
-
Charlene Son RigbyCHARLENE SON RIGBY
PRESIDENT
- Total calculated
- $0
- Hours/week
- 30
-
Melissa HiocoMELISSA HIOCO
DIRECTOR, DEVELOPMENT
- Total calculated
- $0
- Hours/week
- 30
-
Jacqueline SteinbergJACQUELINE STEINBERG
VICE PRESIDENT & SCIENTIFI
- Total calculated
- $0
- Hours/week
- 10
-
Heather JonesHEATHER JONES
TREASURER
- Total calculated
- $0
- Hours/week
- 15
-
Jennifer ClatterbuckJENNIFER CLATTERBUCK
DIRECTOR, COMMUNITY ENGAGE
- Total calculated
- $0
- Hours/week
- 5
-
Russ NovyRUSS NOVY
DIRECTOR, MARKETING & BRAN
- Total calculated
- $0
- Hours/week
- 5
-
Cristina BrennanCRISTINA BRENNAN
SECRETARY
- Total calculated
- $0
- Hours/week
- 5
-
Jared BarnumJARED BARNUM
DIRECTOR, TECHNOLOGY
- Total calculated
- $0
- Hours/week
- 5
-
Daniele GreinerDANIELE GREINER
DIRECTOR, DEVELOPMENT
- Total calculated
- $0
- Hours/week
- 5
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.
Grants on this return
-
$104,399
TO FUND RESEARCH
-
$100,000
TO FUND RESEARCH
-
$82,500
TO FUND CLINICAL TRIAL
-
TO FUND RESEARCH
-
TO FUND RESEARCH
-
$10,000
TO FUND RESEARCH
Provenance
- Return type
- form_990
- Tax year
- 2023
- Filed
- 1 October 2024
- IRS schema version
- 2023v5.1
- Source object
- 202432849349301718
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.