Totals
- Total revenue
- $1,387,712
- Total expenses
- $1,367,327
- Contributions and grants received
- $1,397,138
- Grants paid
- $302,773
- Program service revenue
- $0
- Investment income
- -$9,426
- Other revenue
- $0
- Total assets, end of year
- $5,372,000
- Total liabilities, end of year
- $358,670
- Net assets or fund balances, end of year
- $5,013,330
- Program services expenses (Part IX)
- $993,515
- Management and general expenses
- $212,396
- Fundraising expenses
- $161,416
- Program service expenses (Part III)
- $993,515
Program services were 72.7% 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.
-
1f · All other contributions, gifts and grants
$1,397,138
-
1g · Noncash contributions included above
$21,848
-
3 · Investment income
total $97,359 · excluded $97,359
-
7a · Gross sales of assets other than inventory
securities $73,234
-
7b · Less cost or other basis and sales expenses
securities $180,019
-
7c · Gain or loss
securities -$106,785
-
7d · Net gain or loss
total -$106,785 · excluded -$106,785
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $302,773 · program services $302,773
-
5 · Compensation of officers, directors and key employees
total $207,242 · program services $124,345 · management and general $31,086 · fundraising $51,811
-
7 · Other salaries and wages
total $377,013 · program services $284,666 · management and general $60,617 · fundraising $31,730
-
9 · Other employee benefits
total $24,236 · program services $18,460 · management and general $2,460 · fundraising $3,316
-
10 · Payroll taxes
total $68,230 · program services $53,316 · management and general $6,522 · fundraising $8,392
-
11b · Fees: legal
total $19,784 · program services $19,784
-
11c · Fees: accounting
total $55,627 · management and general $55,627
-
11g · Fees: other
total $102,419 · program services $83,669 · fundraising $18,750
-
13 · Office expenses
total $84,052 · program services $15,090 · management and general $45,638 · fundraising $23,324
-
17 · Travel
total $69,319 · program services $55,099 · management and general $14 · fundraising $14,206
-
23 · Insurance
total $4,067 · management and general $4,067
-
24a · Other expenses: PRINTING AND PUBLICATIO
total $25,990 · program services $23,708 · management and general $506 · fundraising $1,776
-
24b · Other expenses: DUES AND FEES
total $9,274 · program services $4,813 · management and general $4,386 · fundraising $75
-
24c · Other expenses: MISCELLANEOUS
total $9,191 · program services $1,020 · management and general $455 · fundraising $7,716
-
24d · Other expenses: AUDIO VISUAL
total $4,944 · program services $4,624 · fundraising $320
-
24e · All other expenses
total $3,166 · program services $2,148 · management and general $1,018
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $697,821 · end of year $686,513
-
3 · Pledges and grants receivable
beginning of year $30,000 · end of year $103,000
-
9 · Prepaid expenses and deferred charges
beginning of year $47,767 · end of year $42,455
-
11 · Investments: publicly traded securities
beginning of year $5,211,353 · end of year $4,540,032
-
17 · Accounts payable and accrued expenses
beginning of year $88,869 · end of year $88,438
-
18 · Grants payable
beginning of year $169,200 · end of year $243,049
-
19 · Deferred revenue
beginning of year $27,183 · end of year $27,183
-
27 · Net assets without donor restrictions
beginning of year $1,787,258 · end of year $998,736
-
28 · Net assets with donor restrictions
beginning of year $3,914,431 · end of year $4,014,594
Mission and programs · 2022
Mission
THE BARTH SYNDROME FOUNDATION IS AN ENGAGED, GLOBAL COMMUNITY WHOSE MISSION IS SAVING LIVES THROUGH EDUCATION, ADVANCES IN TREATMENT, AND FINDING A CURE FOR BARTH SYNDROME.
Activities or mission (Part I)
1)TO PROMOTE AWARENESS OF BARTH SYNDROME; 2) TO EDUCATE AND SUPPORT PHYSICIANS, RESEARCH CENTERS, AND ORGANIZATIONS ADDRESSING THE CAUSES, DIAGNOSIS, TREATMENT AND CURE OF BARTH SYNDROME; AND 3) TO ASSIST IN THE SUPPORT OF THOSE SUFFERING FROM BARTH SYNDROME AND THEIR FAMILIES.
-
THE BARTH SYNDROME SCIENCE, MEDICINE & RESEARCH PROGRAM IN 2021 WAS COMPRISED OF A) THE BSF RESEARCH PROGRAM TO FOSTER SCIENTIFIC AND CLINICAL INVESTIGATIONS INTO BARTH SYNDROME TO FACILITATE THE DEVELOPMENT OF A SPECIFIC TREATMENT OR A CURE FOR THIS DISEASE, AND B)THE BARTH SYNDROME MEDICAL DATABASE AND BIO-REPOSITORY FOR THE COLLECTION AND STORAGE OF MEDICAL INFORMATION/SAMPLES ON INDIVIDUALS WITH BARTH SYNDROME OVER TIME TO GAIN A BETTER UNDERSTANDING OF THE DISEASE.
Expenses $466,487 · Grants $120,373
-
THE BARTH SYNDROME INTERNATIONAL SCIENTIFIC, MEDICAL AND FAMILY CONFERENCE IS GENERALLY HELD EVERY TWO YEARS. THE CONFERENCE BRINGS AFFECTED FAMILIES, RESEARCH SCIENTISTS AND CLINICIANS TOGETHER IN ONE PLACE AT A TIME SO THAT THEY MAY COLLABORATE AND SHARE THEIR KNOWLEDGE TO GAIN A GREATER UNDERSTANDING OF BARTH SYNDROME AND LEARN ABOUT THE LATEST DISCOVERIES AND SCIENTIFIC RESEARCH AVAILABLE. FAMILIES HAVE A UNIQUE OPPORTUNITY TO BE SEEN BY THE WORLD'S GREATEST EXPERTS, THEREBY CONTRIBUTING DIRECTLY TO THE SEARCH FOR A CURE BY PRODIVING INFORMATION AND TISSUE SAMPLES. (WHILE NOT HELD IN 2021 DUE TO COVID-19, THE CONFERENCE CONTINUES TO BE A KEY PILLAR.)
Expenses $65,922
-
THE WILL MCCURDY FUND FOR THE ADVANCEMENT OF THERAPIES FOR BARTH SYNDROME WILL BE USED EXCLUSIVELY FOR THE DEVELOPMENT OF THERAPIES DESIGNED TO PREVENT, ALLEVIATE, OR ELIMINATE THE SYMPTOMS OF BARTH SYNDROME.
Expenses $182,400 · Grants $182,400
-
REPRESENTS AWARENESS PROGRAMS DESIGNED TO ENSURE FAMILIES, PHYSICIANS, AND RESEARCHERS ARE AWARE OF BARTH SYNDROME. THESE PROGRAMS ARE COMPRISED OF SERVICES RELATED TO ADVOCACY AND AWARENESS, COMMUNICATION AND AWARENESS, AND FAMILY SERVICES.
Expenses $278,706
As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.
Listed in Part VII
-
ANDREW BUDDEMEYER
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 2
-
BRANDI DAGUE
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 2
-
BRUCE DEVELLE
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 2
-
FLORENCE MANNES
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 2
-
MARYANNE CHRISANT
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 2
-
MEGAN BRANAGH
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 2
-
MICHELLE FLOREZ
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 2
-
NINA RUSSELL
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 2
-
PETER VAN LOO
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 2
-
MIRIAM GREENBERG
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 2
-
MARK GREENE
BOARD MEMBER
- Total calculated
- $0
- Hours/week
- 2
-
KATHERINE MCCURDY
CHAIR
- Total calculated
- $0
- Hours/week
- 2
-
KEVIN G WOODWARD
TREASURER
- Total calculated
- $0
- Hours/week
- 2
-
JAMES BAFFA
SECRETARY
- Total calculated
- $0
- Hours/week
- 2
-
EMILY MILLIGAN
EXECUTIVE DIRECTOR
- Total calculated
- $207,242
- From this org
- $198,896
- From related orgs
- $0
- Other
- $8,346
- Hours/week
- 35
Schedule J breakdown matched by us
- Base
- $178,896
- Bonus
- $0
- Other
- $20,000
- Deferred
- $8,346
- Nontaxable benefits
- $0
- Filer's total
- $207,242
-
ERIK LONTOK
DIRECTOR OF RESEARCH
- Total calculated
- $136,123
- From this org
- $130,646
- From related orgs
- $0
- Other
- $5,477
- Hours/week
- 35
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 · 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
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
-
TEXAS HEALTH CENTER
$100,000
ALCAT1 AS A NOVEL TARGET FOR THE TREATMENT OF CARDIOMYOPATHY IN BARTH SYNDROME
-
COLORADO STATE UNIVERSITY
$82,400
FEEDING THE STARVING HEART IN BARTH SYNDROME
-
BOSTON CHILDREN'S HOSPITAL
$68,750
OPTIMIZATION OF BARTH SYNDROME GENE THERAPY
-
NYU REGISTRY ARRHYTHMIA STUDY
$51,623
ACTIVATING PYRUVATE DEHYDROGENASE COMPLEX TO IMPROVE BARTH SYNDROMECARDIAC FUNCTION
Provenance
- Return type
- form_990
- Tax year
- 2022
- Filed
- 21 June 2023
- IRS schema version
- 2022v5.0
- Source object
- 202342149349300909
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