Overview
What is Cardio-Facio-Cutaneous International?
Cardio-Facio-Cutaneous International is a nonprofit organization dedicated to improving the lives of individuals and families affected by the rare condition known as Cardio-Facio-Cutaneous Syndrome. They offer family support through a comprehensive website, family outreach services, email lists, private social media groups, and personal phone calls to families in crisis. The organization also provides trained volunteer family liaisons and offers micro-grants to families in need. To further their mission, they host international family conferences, maintain a website, and support research projects related to the syndrome. Their activities aim to educate families and agencies about the condition, provide resources, and ultimately, seek potential treatments. They communicate with over 1,600 families and supporters through newsletters.
Official website here: www.cfcsyndrome.org
What are the reviews and ratings of this charity?
Charity Navigator Rating: 36%, Zero-Star out of Four Star Rating
Cardio-Facio-Cutaneous International (CFC International) has received a low rating of 36% from Charity Navigator, primarily due to its accountability and finance score which is entirely based on governance factors. While the organization boasts an independent board and has shown no material diversion of assets, it lacks essential policies such as a conflict of interest, whistleblower, and document retention policies, which are critical for transparency and accountability.
User reviews from Great Nonprofits present a more positive perspective, with many families expressing gratitude for the support and resources provided by CFC International. Users highlighted the organization's role in connecting families affected by CFC syndrome and offering vital information that has helped them navigate the challenges associated with rare genetic conditions. The consensus among reviewers is that the charity is a lifeline for those impacted by CFC, providing emotional support and practical advice.
Despite the positive feedback, the low rating from Charity Navigator raises concerns about the governance practices of the organization. While users appreciate the services offered, potential donors and supporters may want to consider these accountability issues when deciding to contribute or engage with CFC International.
This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.
What do the Facebook reviews say about Cardio-Facio-Cutaneous International?
100% of 13 reviewers on Facebook recommend Cardio-Facio-Cutaneous International. Here’s a summary of their insights:
Many users express gratitude for the support and information provided regarding Cardio-Facio-Cutaneous Syndrome. One reviewer highlighted their personal experience with the condition in their child, seeking more information about the syndrome, which underscores the importance of community and knowledge-sharing facilitated by the organization.
The overall sentiment towards this nonprofit is overwhelmingly positive, indicating that families find value in the resources and connections offered. People appear to feel supported and understood in their journeys, reinforcing the nonprofit's role in providing essential support to those affected by the syndrome.
This AI summary has been generated from reviews found on Facebook.
Is Cardio-Facio-Cutaneous International legitimate?
Cardio-Facio-Cutaneous International is a legitimate nonprofit organization registered as a 501(c)(3) entity. Cardio-Facio-Cutaneous International 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: $86,152
Professional Fundraising Fees: $0
Other Salaries and Wages: $52,111
For more financial information, click here
Official website here: www.cfcsyndrome.org
What is the mission statement of Cardio-Facio-Cutaneous International?
Cardio-Facio-Cutaneous International operates as a rare disease advocacy organization, devoted to improving the lives of affected families. Their mission encompasses providing educational resources and literature to families and agencies supporting children with the Cardio-Facio-Cutaneous syndrome. They host events such as biennial international family conferences, maintain a private family computer listserve and Facebook page, and support researchers and their projects to advance knowledge about this rare condition and potential treatments. Their ultimate goal is to help families navigate this challenging situation and, ideally, find solutions for their affected family members.
Official website here: www.cfcsyndrome.org
Who is the CEO of Cardio-Facio-Cutaneous International?
Glenda Hux is the President of Cardio-Facio-Cutaneous International.
Official website here: www.cfcsyndrome.org
What is the revenue of Cardio-Facio-Cutaneous International?
Cardio-Facio-Cutaneous International's revenue in 2022 was $108,197.
Official website here: www.cfcsyndrome.org
Who are the executives of Cardio-Facio-Cutaneous International and what are their salaries?
The average compensation at Cardio-Facio-Cutaneous International during 2022 was $46,088. There are 3 employees and 8 volunteers at Cardio-Facio-Cutaneous International.
Here are 8 key members and their salaries:
- Compensation: $86,152
- Related: $0
- Other: $0
- Compensation: $0
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- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
Official website here: www.cfcsyndrome.org
Where can I find the form 990 for Cardio-Facio-Cutaneous International?
Cardio-Facio-Cutaneous International's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.cfcsyndrome.org
Learn more at the official website: www.cfcsyndrome.org
Mission Statement of Cardio-Facio-Cutaneous International
Cardio-Facio-Cutaneous International, a rare disease advocacy organization, is committed to improving the quality of life for families affected by the Cardio-Facio-Cutaneous syndrome. Their mission is threefold: to offer education and literature to families and agencies supporting children with this rare condition, to support researchers and their projects, and to empower families with the latest knowledge about the syndrome and potential treatments for their affected members. To achieve this, the organization hosts biannual international family conferences and maintains a private family computer listserve and Facebook page. By providing a platform for information exchange and networking, Cardio-Facio-Cutaneous International aims to foster a supportive community for families dealing with this rare condition, enabling them to stay informed and engaged in the ongoing research and treatment developments.
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Impact
October, 2024
Cardio-Facio-Cutaneous International significantly enhances the quality of life for families affected by the rare Cardio-Facio-Cutaneous (CFC) syndrome through a multifaceted approach. The organization provides crucial family support services that foster connection and understanding among affected families. Their robust website serves as a central hub for accessing the latest resources, while dedicated family outreach initiatives encourage ongoing communication and solidarity.
Families are invited to join an email listserv and a private Facebook group where they can share experiences and provide mutual support. For those in crisis, personalized phone calls offer non-medical assistance and guidance, addressing immediate needs and fostering a sense of community.
To assist new families, trained volunteer liaisons are available to offer support and information, ensuring that they don’t navigate the challenges of CFC syndrome alone. Upon registration, families receive a comprehensive welcome packet featuring essential information about the syndrome, further reinforcing the organization's commitment to education.
Additionally, Cardio-Facio-Cutaneous International provides micro-grants to families in need, alleviating some financial burdens associated with caregiving and medical costs. Their outreach includes newsletters distributed to over 1,600 families and supporters, keeping them informed and engaged.
Furthermore, by hosting biennial international family conferences, the organization facilitates face-to-face interactions, promoting a sense of belonging among families and providing a platform for sharing knowledge and experiences. Their commitment to supporting research also empowers families with information about CFC syndrome and potential treatments, fostering hope for the future amidst the challenges posed by this rare condition.
This information is meant to be a general summary of Cardio-Facio-Cutaneous International. 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: $85
- Gross Receipts: $239,866
Assets and Liabilities:
- Total Assets: $550,724
- Total Liabilities: $0
- Net Assets: $550,724
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Organization Details
Principal Officer
Glenda Hux
Main Address
5 Wexford Court, St James, NY, 11780
Website
www.cfcsyndrome.orgNTEE Category
Code: B99 - Education
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