PLATINUM2023

BARTH SYNDROME FOUNDATION INC

Saving lives through education, advances in treatment, and finding a cure for Barth syndrome.

aka BSF   |   Larchmont, NY   |  https://www.barthsyndrome.org

Mission

The Barth Syndrome Foundation (BSF) is dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome (BTHS).

Ruling year info

2001

Principal Officer

Emily Milligan MPH

Chair, Board of Directors

Kate McCurdy

Main address

2005 Palmer Avenue #1033

Larchmont, NY 10538 USA

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EIN

22-3755704

NTEE code info

Pediatrics (G98)

Heart and Circulatory (H43)

Birth Defects, Genetic Diseases Research (H20)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Research Grant Program

The BSF sponsors a yearly competitive research grant program to facilitate advances in Barth syndrome understanding and to encourage the discovery of new treatments. Currently, applicants are allowed to budget up to US $40,000 in their proposals and ask for the funds to be distributed over a 1-year, 1.5-year, or a 2-year timeframe. Grant applications are evaluated by the BSF's international Scientific and Medical Advisory Board with the input from expert outside reviewers, and their recommendations for funding or not funding are communicated to the BSF Board of Directors who make the final decision.

The BSF Research Grant Program is focused on providing “seed grant funding” to young investigators as well as attracting experienced investigators new to the field of Barth syndrome basic science or clinical research. We anticipate that the funds provided will be used for the testing of initial hypotheses and the collection of preliminary data leading to successful long-term funding by the National Institutes of Health (NIH) and other major grant-giving institutions around the world.

Population(s) Served
People with diseases and illnesses

The purpose of BSF's Awareness Program is, on a global level, to increase awareness among the medical community, academic community, the medical research community and the lay population about the genetic disorder called Barth syndrome and the Barth Syndrome Foundation including its international affiliates.

Population(s) Served
Adults

The Science and Medicine Program is dedicated to accomplish the mission statement of the BSF—Saving lives through education, advances in treatment, and finding a cure for Barth syndrome.

Of the many components of the Science and Medicine program (which includes the salary of the BSF Science Director) the most prominent is the Research Grant Program which has been discussed above.  Besides the individual research grants that are awarded and monitored each year, the BSF pursues initiatives that deal with:  the creation and distribution of animal models, the production of research tools for investigators, the cultivation and support of young scientists/physicians to pursue research into Barth syndrome, the planning of and the NIH grant application for the 2-day, scientific-medical sessions of the biennial BSF conferences, and the monitoring of the Barth Syndrome Medical Database and Biorepository (in collaboration with the University of Florida and Children’s Hospital of Boston).  This Medical Database and BioRepository was established and is being maintained to promote the collection and sharing of clinical histories and biological samples for use by qualified researchers.  There is a separate budget for the Medical Database and BioRepository.  The BSF also supports a human tafazzin Gene Mutation and Variation Database which provides an up-to-date listing of all known mutations and variations in the human tafazzin gene.  The BSF also maintains the most up-to-date educational materials and research findings concerning Barth syndrome, which includes a comprehensive on-line library that serves both the medical community and affected individuals and their families.  Another duty of the Science and Medicine Program is to update and maintain its volunteer Scientific and Medical Advisory Board (SMAB).  In addition to serving as the BSF Research Grant Program review committee, the SMAB provides advice and counsel to the BSF to ensure proper and accurate information about Barth syndrome is provided to anyone who requests it. For further information, please visit www.barthsyndrome.org(http://www.barthsyndrome.org) .

Population(s) Served
Adults
People with diseases and illnesses

The purpose of BSF's Family Services Program is to create and foster a caring community that will offer each Barth Family information, guidance and emotional support and maintain the most comprehensive Membership Registry of individuals affected by Barth syndrome.

 

BSF maintains the following resources for affected families:

 

The BSF website (www.barthsyndrome.org(http://www.barthsyndrome.org) ) contains the most up-to-date educational materials and research findings, including a comprehensive on-line library which serves both the medical community and affected families.

Our International Barth Syndrome Conference, held every two years, in which the latest information is discussed with families.  Free clinics are also held enabling families to consult with medical experts from around the world. In addition, the clinics offer families the opportunity to participate in research studies and provide important clinical data and biological samples to the Barth Syndrome Medical Database and BioRepository.   The ‘Family Listserv’ is a forum where healthcare providers and families engage in open discussions on the many aspects of this disorder and its treatment.  It is an immediate educational resource for families.

Population(s) Served
Families
People with diseases and illnesses

BSF's international conference, held every two years, is really two simultaneous meetings.  One meeting brings together doctors and scientists involved in the many aspects of the disorder to dicsuss the latest underlying scientific developments and clinical insights.  It is a unique collaboration that accelerates advances in the understanding and treatment of Barth syndrome (BTHS).  The other is a family meeting in which the latest information is discussed with families.  Clinics are also held enabling families to consult with medical experts from around the world.  In addition, the clinics offer families the opportunity to provide important clinical data and biological samples to the Barth Syndrome Medical Database and BioRepository.

Population(s) Served
Adults

To provide centralized, accurate and relevant information (appropriately approved), as it relates to BSF and Barth syndrome, to affected individuals and families, the medical community faculty and staff, research scientists, donors and the general public, in a timely and accurate manner. A key feature of this program will be strengthening the communications link across all programs while ensuring medical & scientific accuracy, quality control, and educational value.

Population(s) Served
Adults

Where we work

Affiliations & memberships

National Organization for Rare Disorders - Member

Genetic Alliance 2007

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Related Program

Communications and Marketing

Type of Metric

Other - describing something else

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

(1) To insure that everyone with Barth syndrome is quickly and accurately diagnosed; (2) To insure that all diagnosed families actively participate in the Barth Syndrome Registry and Repository (BRR); (3) To encourage, guide, and fund additional research to improve understanding, diagnosis, and treatment, and ultimately to develop a cure for Barth syndrome; (4) To communicate information about effective treatments of Barth syndrome to all attending physicians; (5) To grow and strengthen our caring and informed community of Barth families actively involved in supporting each other and our organization; (6) To build the expanding base of committed contributors who will provide the funds we need to achieve our vision; (7) To inspire, support, and be good stewards of the time and talents of the growing number of volunteers and staff dedicated to our vision.

PRIORITY 1 – Expand science and medicine program to further encourage finding treatments or a cure; PRIORITY 2 – Enhance the capacity of Barth Syndrome Foundation to better meet its mission; PRIORITY 3 – Build confidence and trust in Barth Syndrome Foundation community and resources.

Financials

BARTH SYNDROME FOUNDATION INC
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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BARTH SYNDROME FOUNDATION INC

Board of directors
as of 08/02/2023
SOURCE: Self-reported by organization
Board chair

Kate McCurdy

Barth Syndrome Foundation

Term: 2020 - 2024

Florence Mannes

Association Syndrome de Barth France

Kevin Woodward

Barth Syndrome Foundation

Bruce J. Develle

Barth Syndrome Foundation

Megan Branagh

Barth Syndrome Foundation

Emily Milligan

Barth Syndrome Foundation, ex-officio

Brandi Dague

Barth Syndrome Foundation

Michelle Florez

Barth Synrome Foundation

James Baffa

Barth Syndrome Foundation

Andrew Buddemeyer

Barth Syndrome Foundation

Maryanne Chrisant

Barth Syndrome Foundation

Miriam L. Greenberg

Barth Syndrome Foundation

Mark Greene

Barth Syndrome Foundation

Nina Russell

Barth Syndrome Foundation

Peter van Loo

Barth Syndrome Foundation

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 8/16/2022

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data