Overview
What is The Barth Syndrome Foundation?
The Barth Syndrome Foundation, located in Larchmont, New York, is a dedicated nonprofit organization with a mission to save lives affected by Barth Syndrome. They accomplish this through various initiatives. Firstly, they foster scientific and clinical investigations into the disease with the aim of developing a specific treatment or a cure. Secondly, they maintain a medical database and bio-repository, collecting medical information and samples from individuals with Barth Syndrome over time to better understand the condition. Their activities extend beyond research, as they also promote awareness of the syndrome, educate and support medical professionals and organizations, and offer assistance to those suffering from Barth Syndrome and their families. With a team of six dedicated individuals, The Barth Syndrome Foundation is a global community committed to making a significant impact on this rare genetic disorder.
Official website here: www.barthsyndrome.org
Is The Barth Syndrome Foundation legitimate?
The Barth Syndrome Foundation is a legitimate nonprofit organization registered as a 501(c)(3) entity. The Barth Syndrome Foundation submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Here are some key statistics you may want to consider:
Executive Compensation: $207,242
Professional Fundraising Fees: $0
Other Salaries and Wages: $377,013
For more financial information, click here
Official website here: www.barthsyndrome.org
What is the mission statement of The Barth Syndrome Foundation?
The Barth Syndrome Foundation serves as an engaged global community, dedicated to saving lives. Their mission is achieved through education, advancements in treatment, and the pursuit of finding a cure for Barth Syndrome. The organization aims to promote awareness of the condition, educate and support medical professionals, research centers, and organizations working on the causes, diagnosis, treatment, and potential cure of Barth Syndrome. Furthermore, they provide assistance to those suffering from the syndrome and their families. In 2021, their scientific, medical, and research program was focused on fostering investigations into Barth Syndrome to develop a specific treatment or cure, as well as collecting and storing medical information and samples on individuals with the disease over time to gain a better understanding of the condition.
Official website here: www.barthsyndrome.org
Who is the CEO of The Barth Syndrome Foundation?
Emily Milligan is the Board Member of The Barth Syndrome Foundation.
Official website here: www.barthsyndrome.org
What is the revenue of The Barth Syndrome Foundation?
The Barth Syndrome Foundation's revenue in 2022 was $1,387,712.
Official website here: www.barthsyndrome.org
Who are the executives of The Barth Syndrome Foundation and what are their salaries?
The average compensation at The Barth Syndrome Foundation during 2022 was $97,376. There are 6 employees and 200 volunteers at The Barth Syndrome Foundation.
Here are 16 key members and their salaries:
- Emily Milligan (Executive Director)
- Erik Lontok (Director Of Research)
- Andrew Buddemeyer (Board Member) [Trustee/Director]
- Brandi Dague (Board Member) [Trustee/Director]
- Bruce Develle (Board Member) [Trustee/Director]
- Florence Mannes (Board Member) [Trustee/Director]
- Maryanne Chrisant (Board Member) [Trustee/Director]
- Megan Branagh (Board Member) [Trustee/Director]
- Michelle Florez (Board Member) [Trustee/Director]
- Nina Russell (Board Member) [Trustee/Director]
- Peter Van Loo (Board Member) [Trustee/Director]
- Miriam Greenberg (Board Member) [Trustee/Director]
- Mark Greene (Board Member) [Trustee/Director]
- Katherine Mccurdy (Chair) [Trustee/Director]
- Kevin G Woodward (Treasurer) [Trustee/Director]
- James Baffa (Secretary) [Trustee/Director]
Official website here: www.barthsyndrome.org
Where can I find the form 990 for The Barth Syndrome Foundation?
The The Barth Syndrome Foundation’s most recent form 990 was submitted in 2022 and can be accessed here
Official website here: www.barthsyndrome.org
Learn more at the official website: www.barthsyndrome.org
Mission Statement of The Barth Syndrome Foundation
The Barth Syndrome Foundation, a globally engaged community, is dedicated to saving lives through education, advancements in treatment, and the quest for a cure for Barth Syndrome. Their mission is multifaceted, aiming to promote awareness of the rare condition, educate and support healthcare providers, research centers, and organizations working on the causes, diagnosis, treatment, and potential cure for Barth Syndrome. Furthermore, they provide assistance to individuals affected by Barth Syndrome and their families, offering them the necessary support during their journey.
In pursuit of their mission, The Barth Syndrome Foundation has established a comprehensive research program. This program, in 2021, was primarily focused on two key areas. Firstly, they funded scientific and clinical investigations into Barth Syndrome, with the ultimate goal of developing a specific treatment or potentially discovering a cure for this disease. Secondly, they managed the Barth Syndrome Medical Database and Bio-Repository. This initiative involves the collection and storage of medical information and samples from individuals diagnosed with Barth Syndrome over time. By doing so, they aim to gain a better understanding of the disease, paving the way for more effective treatments and potential breakthroughs in the future.
Impact
This information is meant to be a general summary of The Barth Syndrome Foundation. Please take the time to review official sources before making any decisions based upon the content provided here.
Thursday, August 15, 2024
The Barth Syndrome Foundation is impacting the lives of individuals suffering from Barth Syndrome and their families by promoting awareness, supporting physicians and research centers, and fostering scientific investigations into this rare disease. Through its programs, such as the research program and medical database, the foundation is driving advancements in treatment and working towards finding a cure. The foundation's mission to save lives through education and research is making a significant difference in the Barth Syndrome community globally.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2022.
- Assets and Liabilities:
Organization Details
Founding Year
2000
Phone
(914) 303-6323
Principal Officer
Emily Milligan
Main Address
2005 PALMER AVENUE 1033, LARCHMONT, NY, 10538
Website
www.barthsyndrome.org
NTEE Category
Code: T30 - Philanthropy
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