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
What are the reviews and ratings of this charity?
Charity Navigator Rating: 100%, Four-Star out of Four Stars
The Barth Syndrome Foundation (BSF) has received a perfect score from Charity Navigator, demonstrating exceptional accountability and financial management. This rating reflects the organization's commitment to transparency, as evidenced by its independent board and rigorous financial oversight. The organization has no reported material diversions of assets and maintains a strong program expense ratio, indicating that a significant portion of its funds directly supports its mission.
User feedback consistently highlights the profound impact BSF has on families affected by Barth Syndrome. Many reviewers describe the foundation as a lifeline, providing essential information, emotional support, and a sense of community. Families express gratitude for the organization's dedication to fostering connections among affected individuals and their families, as well as facilitating vital research aimed at finding treatments and potential cures for this rare disorder.
While the overwhelming majority of reviews are positive, emphasizing the strength of community and the depth of resources provided, some feedback indicates a need for continued research funding and advocacy efforts. Overall, BSF stands out as a passionate and committed organization, making significant strides in supporting families and advancing research in the field of Barth Syndrome.
This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.
What do the Facebook reviews say about The Barth Syndrome Foundation?
100% of 24 reviewers on Facebook recommend The Barth Syndrome Foundation. Here is a summary of their reviews:
The foundation is highly regarded for providing essential support and resources to individuals and families affected by Barth Syndrome. Reviewers express gratitude for the information, assistance, and shared experiences that the foundation facilitates. Many appreciate the foundation's commitment to funding medical research and fostering hope for potential cures. Overall, the sentiment reflects a strong endorsement of the foundation's efforts in supporting a community that faces unique challenges.
This AI summary has been generated from reviews found on Facebook.
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.
Heare 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:
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- Other: $5,477
Official website here: www.barthsyndrome.org
Where can I find the form 990 for The Barth Syndrome Foundation?
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.
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Impact
October, 2024
The Barth Syndrome Foundation significantly impacts the community affected by Barth syndrome through its dedicated efforts in awareness, education, and research. By promoting awareness of this rare genetic disorder, the Foundation enhances understanding among the general public and healthcare professionals, which is crucial for early diagnosis and intervention.
Through educational initiatives and resources, the Foundation supports physicians and research centers committed to addressing Barth syndrome's causes, diagnostics, and potential treatments. This collaborative approach facilitates a robust exchange of knowledge and fosters scientific inquiry.
In 2021, the Foundation advanced scientific and clinical investigations via its Barth Syndrome Science, Medicine & Research Program. This program includes a research initiative focused on developing targeted treatments or a cure. Additionally, the creation of the Barth Syndrome Medical Database and Bio-repository allows for the collection and storage of medical information and samples from individuals with Barth syndrome. This comprehensive approach aims to deepen the understanding of the disease and enhance care for those affected.
Furthermore, the Foundation plays a vital role in supporting families impacted by Barth syndrome, providing resources and a sense of community. Through these efforts, the Barth Syndrome Foundation is actively engaged in saving lives by promoting education, advancing treatment options, and working towards a cure.
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.
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.
- Investment Income: -$9,426
- Gross Receipts: $1,567,731
Assets and Liabilities:
- Total Assets: $5,372,000
- Total Liabilities: $358,670
- Net Assets: $5,013,330
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Organization Details
Founding Year
2000
Phone
(914) 303-6323Principal Officer
Emily Milligan
Main Address
2005 PALMER AVENUE 1033, LARCHMONT, NY, 10538
Website
www.barthsyndrome.orgNTEE Category
Code: T30 - Philanthropy
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