Overview
What is Bcm Families Foundation?
The Bcm Families Foundation, based in Jupiter, Florida, is a nonprofit organization primarily dedicated to supporting research, projects, and organizations related to diagnosing, treating, or curing Blue Cone Monochromacy (BCM). Despite facing challenges, such as a halt in gene therapy development due to funding issues and subsequent legal consultations, the foundation has remained resilient. They have financed projects at the University of California Berkeley and the University of West Virginia to test new gene therapy vectors. The foundation has also maintained and expanded the BCM Patient Registry, essential for a clinical trial. Additionally, they have fostered connections with other patient organizations and umbrella groups, participated in conferences and webinars, and engaged in various fundraising activities, including volunteering-led campaigns. Community building is another focus, with in-person family meetings planned and rescheduled due to unforeseen circumstances.
Official website here: www.blueconemonochromacy.org
What are the reviews and ratings of this charity?
Charity Navigator Rating: 74% (Two-Star out of Four Stars)
The BCM Families Foundation has received a Two-Star rating from Charity Navigator, indicating a mixed performance in its accountability and financial practices. With an Accountability & Finance Score of 72, the organization demonstrates a commitment to transparency, although there remains room for improvement in certain financial aspects. A notable strength is the high Program Expense Ratio of 94.87%, signifying that a substantial portion of its funds is allocated directly towards program services.
An impressive aspect of BCM Families Foundation is its perfect score of 100 in Culture & Community. The organization actively engages with the communities it serves by collecting feedback annually and ensuring that under-represented voices are included in this process. They utilize this feedback to make meaningful improvements, develop new programs, and strengthen relationships with those they serve, which reflects a strong commitment to community involvement and responsiveness.
However, while the foundation shows effective practices in feedback collection and utilization, it received a Two-Star rating primarily due to its overall financial performance. Users and stakeholders might consider the foundation’s financial accountability and long-term sustainability when evaluating its impact and effectiveness in addressing the needs of families.
This AI summary has been generated from information found on Charity Navigator.
Is Bcm Families Foundation legitimate?
Bcm Families Foundation is a legitimate nonprofit organization registered as a 501(c)(3) entity. Bcm Families 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: $0
Professional Fundraising Fees: $0
Other Salaries and Wages: $0
For more financial information, click here
Official website here: www.blueconemonochromacy.org
What is the mission statement of Bcm Families Foundation?
The Bcm Families Foundation's mission is centered around providing financial support for research, projects, activities, and organizations related to the diagnosis, treatment, or cure of Blue Cone Monochromacy (BCM). The organization also aims to establish networks and synergies with other groups and organizations dedicated to eye and/or other rare disease issues. Furthermore, it strives to educate the general public about BCM. In its efforts, the foundation collaborates with various patient organizations and umbrella organizations to advance its cause.
Official website here: www.blueconemonochromacy.org
Who is the CEO of Bcm Families Foundation?
Renata Sarno is the President And Director of Bcm Families Foundation.
Official website here: www.blueconemonochromacy.org
What is the revenue of Bcm Families Foundation?
Bcm Families Foundation's revenue in 2022 was $170,126.
Official website here: www.blueconemonochromacy.org
Who are the executives of Bcm Families Foundation and what are their salaries?
There 35 volunteers at Bcm Families Foundation.
Here are 5 key members and their salaries:
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Official website here: www.blueconemonochromacy.org
Where can I find the form 990 for Bcm Families Foundation?
Bcm Families Foundation's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.blueconemonochromacy.org
Learn more at the official website: www.blueconemonochromacy.org
Mission Statement of Bcm Families Foundation
The Bcm Families Foundation, dedicated to blue cone monochromacy (BCM), aims to support research, projects, activities, and organizations focused on diagnosing, treating, or curing this rare eye condition. Additionally, the organization seeks to establish networks and synergies with other groups and organizations dealing with eye and other rare disease issues. By providing financial backing, the Bcm Families Foundation aims to contribute to the advancement of knowledge and potential cures in the field of BCM. Furthermore, the organization strives to educate the general public about BCM, raising awareness and fostering understanding of this unique condition.
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Impact
October, 2024
BCM Families Foundation has made significant strides in addressing the complexities of Blue Cone Monochromacy (BCM) through targeted research funding, community engagement, and patient support initiatives.
In 2022, the foundation focused its efforts on advancing the search for a cure by collaborating with biotechnology partners and exploring alternative research avenues. Although a promising partnership for gene therapy faced funding challenges, BCMFF adapted by financing innovative projects at the University of California Berkeley and West Virginia University, aimed at testing new gene therapy vectors in animal models.
The foundation also prioritized patient preparation for clinical trials by expanding and maintaining the BCM Patient Registry, which is crucial for gathering participant data. Enhanced engagement with patients and clinicians led to an increased number of participants, ensuring a robust pipeline for future clinical trials.
Community-building efforts were evident through the organization of family meetings, fostering connections among BCM families across Europe and North America. These gatherings provided invaluable opportunities for support, knowledge sharing, and networking, despite challenges such as the rescheduling of the North American meeting due to hurricane disruptions.
Furthermore, BCMFF strengthened its reputation and influence by maintaining connections with various patient and research organizations, participating in key conferences, and engaging in strategic forums focused on rare diseases. Their volunteer-driven fundraising campaigns have also been impactful, raising awareness and supporting the foundation's activities without incurring significant costs.
Overall, the BCM Families Foundation has established itself as a vital force in enhancing research, community support, and education surrounding Blue Cone Monochromacy, making considerable progress toward improving the lives of those affected by this rare condition.
This information is meant to be a general summary of Bcm Families 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.
- Gross Receipts: $170,126
Assets and Liabilities:
- Total Assets: $186,176
- Total Liabilities: $15,315
- Net Assets: $170,861
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Organization Details
Founding Year
2014
Phone
(440) 864-6256Principal Officer
Renata Sarno
Main Address
PO BOX 7711, JUPITER, FL, 33468
Website
www.blueconemonochromacy.orgNTEE Category
Code: G41 - Disease
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