Barth Syndrome Foundation Inc

Organization Overview

Barth Syndrome Foundation Inc is located in Larchmont, NY. The organization was established in 2001. According to its NTEE Classification (T30) the organization is classified as: Public Foundations, under the broad grouping of Philanthropy, Voluntarism & Grantmaking Foundations and related organizations. As of 12/2021, Barth Syndrome Foundation Inc employed 4 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Barth Syndrome Foundation Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2021, Barth Syndrome Foundation Inc generated $1.6m in total revenue. This represents a relatively dramatic decline in revenue. Over the past 7 years, the organization has seen revenues fall by an average of (9.6%) each year. All expenses for the organization totaled $1.0m during the year ending 12/2021. As we would expect to see with falling revenues, expenses have declined by (2.8%) per year over the past 7 years. You can explore the organizations financials more deeply in the financial statements section below.

Since 2016, Barth Syndrome Foundation Inc has awarded 27 individual grants totaling $1,327,943. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2021

Describe the Organization's Mission:

Part 3 - Line 1

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.

Describe the Organization's Program Activity:

Part 3 - Line 4a

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 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.)


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.


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.


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Board, Officers & Key Employees

Name (title)Compensation
Emily Milligan
Executive Director
$169,692
Erik Lontok
Director Of Research
$116,501
James Baffa
Secretary
$0
Kevin G Woodward
Treasurer
$0
Katherine Mccurdy
Chair
$0
Brandi Dague
Board Member
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$0
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$1,214,336
Noncash contributions included in lines 1a–1f $32,169
Total Revenue from Contributions, Gifts, Grants & Similar$1,214,336
Total Program Service Revenue$0
Investment income $72,734
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $276,571
Net Income from Fundraising Events $0
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $1,563,641

Grants Awarded

Over the last fiscal year, Barth Syndrome Foundation Inc has awarded $184,189 in support to 3 organizations.

Grant RecipientAmount

WAKE FOREST UNIVERSITY HEALTH SCIENCES

PURPOSE: ACTIVATING PYRUVATE DEHYDROGENASE COMPLEX TO IMPROVE BARTH SYNDROMECARDIAC FUNCTION

$100,000

VIRGINIA COMMONWEALTH UNIVERSITY

Org PageRecipient Profile

Richmond, VA

PURPOSE: "WHAT IS BARTH TIRED?": A MIXED METHODS APPROACH TO QUALIFYING AND QUANTIFYING FATIGUE IN MALES WITH BARTH SYNDROME

$50,000

AMERICAN HEART ASSOCIATION

Org PageRecipient Profile

Dallas, TX

PURPOSE: ROLE OF CARDIOLIPIN IN CARDIAC ADP/ATP TRANSLOCATOR ACTIVITY

$34,189
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 13 grants that Barth Syndrome Foundation Inc has recieved totaling $68,465.

Awarding OrganizationAmount
Frill Foundation

Houston, TX

PURPOSE: TO FURTHER THEIR EXCLUSIVELY CHARITABLE PURPOSES

$25,000
Jewish Communal Fund

New York, NY

PURPOSE: GENERAL SUPPORT

$21,250
American Online Giving Foundation Inc

Newark, DE

PURPOSE: GENERAL SUPPORT

$7,522
King Spruce Company

Boston, MA

PURPOSE: UNRESTRICTED GIFT

$5,000
D F Dillon Foundation

Lincoln, NE

PURPOSE: PROGRAM

$2,500
Amazonsmile Foundation

Seattle, WA

PURPOSE: GENERAL SUPPORT

$2,043
View Grant Recipient Profile

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