EIN 22-3755704

The Barth Syndrome Foundation

IRS 501(c) type
501(c)(3)
Num. employees
6
Year formed
2000
Most recent tax filings
2022-12-01
Description
Global community saving lives by promoting awareness, education, and research into Barth Syndrome. Conference and research programs to find a cure.
Total revenues
$1,387,712
2022
Total expenses
$1,367,327
2022
Total assets
$5,372,000
2022
Num. employees
6
2022

Program areas at The Barth Syndrome Foundation

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.
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.
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.)
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.

Who funds The Barth Syndrome Foundation

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$97,325
David and Janyce Hoyt Family FoundationProgram Support$50,000
The Frill FoundationTo Further Their Exclusively Charitable Purposes$25,000
...and 13 more grants received

Personnel at The Barth Syndrome Foundation

NameTitleCompensation
Emily MilliganExecutive Director$198,896
Valerie Shelley BowenDirector, Family Services and Advocacy
Erik LontokDirector of Research$130,646
Katherine McCurdyChair$0
Kevin G WoodwardTreasurer$0
...and 3 more key personnel

Financials for The Barth Syndrome Foundation

RevenuesFYE 12/2022
Total grants, contributions, etc.$1,397,138
Program services$0
Investment income and dividends$97,359
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$-106,785
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$1,387,712

Form 990s for The Barth Syndrome Foundation

Fiscal year endingDate received by IRSFormPDF link
2022-122023-08-02990View PDF
2021-122022-07-13990View PDF
2020-122021-08-12990View PDF
2019-122020-08-14990View PDF
2018-122019-06-19990View PDF
...and 8 more Form 990s
Data update history
October 23, 2023
Received grants
Identified 1 new grant, including a grant for $5,875 from The Blackbaud Giving Fund
October 9, 2023
Updated personnel
Identified 2 new personnel
October 8, 2023
Posted financials
Added Form 990 for fiscal year 2022
August 17, 2023
Posted financials
Added Form 990 for fiscal year 2021
June 26, 2023
Received grants
Identified 10 new grant, including a grant for $25,000 from The Frill Foundation
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Provides grantsConducts researchNational levelCommunity engagement / volunteeringTax deductible donations
General information
Address
2005 Palmer Ave 1033
Larchmont, NY 10538
Metro area
New York-Newark-Jersey City, NY-NJ-PA
Website URL
barthsyndrome.org/ 
Phone
(914) 303-6323
IRS details
EIN
22-3755704
Fiscal year end
December
Taxreturn type
Form 990
Year formed
2000
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G80: Specifically Named Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
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