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
Personnel at The Barth Syndrome Foundation
Name | Title | Compensation | Date of data |
---|
Emily Milligan | Executive Director | $198,896 | 2023-08-02 |
Valerie Shelley Bowen | Director, Family Services and Advocacy | | 2021-09-06 |
Erik Lontok | Director of Research | $130,646 | 2022-12-31 |
Katherine McCurdy | Chair | $0 | 2022-12-31 |
Kevin G Woodward | Treasurer | $0 | 2022-12-31 |
...and 3 more key personnel |
Financials for The Barth Syndrome Foundation
Revenues | FYE 12/2022 | FYE 12/2021 | % Change |
---|
Total grants, contributions, etc. | $1,397,138 | $1,214,336 | 15.1% |
Program services | $0 | $0 | - |
Investment income and dividends | $97,359 | $72,734 | 33.9% |
Tax-exempt bond proceeds | $0 | $0 | - |
Royalty revenue | $0 | $0 | - |
Net rental income | $0 | $0 | - |
Net gain from sale of non-inventory assets | $-106,785 | $276,571 | -138.6% |
Net income from fundraising events | $0 | $0 | - |
Net income from gaming activities | $0 | $0 | - |
Net income from sales of inventory | $0 | $0 | - |
Miscellaneous revenues | $0 | $0 | - |
Total revenues | $1,387,712 | $1,563,641 | -11.3% |
Organizations like The Barth Syndrome Foundation
Organization | Type | Location | Revenue |
---|
The International Waldenstrom's Macroglobulinemia Foundation | 501(c)(3) | Sarasota, FL | $4,169,452 |
Lupus Foundation of America DC / MD / VA Chapter | 501(c)(3) | Washington, DC | $761,790 |
The International Dyslexia Association (IDA) | 501(c)(3) | Pikesville, MD | $1,447,753 |
National Pku Alliance | 501(c)(3) | New York, NY | $2,213,963 |
United Mitochondrial Disease Foundation (UMDF) | 501(c)(3) | Pittsburgh, PA | $3,572,403 |
Bobby Jones Chiari and Syringomyelia Foundation | 501(c)(3) | Staten Island, NY | $769,207 |
The Diabetes Link | 501(c)(3) | Boston, MA | $1,771,042 |
Foundation / Diabetes Action Research and Education Foundation | 501(c)(3) | Bethesda, MD | $698,403 |
Charge Syndrome Foundation | 501(c)(3) | Buffalo Grove, IL | $502,106 |
Cornelia de Lange Syndrome Foundation | 501(c)(3) | Avon, CT | $1,084,533 |
Data update history
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/Â
- 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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