Overview
What is Cystinosis Research Foundation?
The Cystinosis Research Foundation, based in Irvine, California, is a dedicated nonprofit organization that strives to enhance the lives of individuals affected by cystinosis, a rare genetic disease. Established in 2003, the foundation has been instrumental in raising awareness and advocating for early diagnosis and appropriate treatment within the cystinosis community, the medical field, and the general public. The organization has a strong focus on funding clinical and translational research, aiming to discover new treatments and potential cures for the disease. Over the years, CRF has strategically invested in research, creating a thriving global community that has significantly impacted the cystinosis field. The foundation's operating costs are privately underwritten, ensuring that 100% of donations go directly towards cystinosis research. Since 2003, CRF has granted over $67 million to various research projects and has become a leading provider of cystinosis research funding worldwide. The foundation's mission is to find better treatments and, ultimately, a cure for cystinosis, improving the quality of life for those affected by the disease.
Official website here: www.cystinosisresearch.org
What are the reviews and ratings of this charity?
Charity Navigator Rating: 100%
The Cystinosis Research Foundation (CRF) has achieved an outstanding four-star rating from Charity Navigator, reflecting its exceptional accountability and financial health. With a perfect score in both Accountability & Finance and Leadership & Adaptability, CRF demonstrates a strong commitment to transparency and effective governance. The foundation’s independent board is made up entirely of 17 members, ensuring integrity in its decision-making processes and operations.
User reviews consistently highlight CRF's significant impact on the cystinosis community, noting that 100% of donations go directly to research initiatives. Reviewers appreciate the organization's dedication to fostering collaboration among researchers, families, and philanthropic partners to advance treatment options and find a cure. Their commitment to education is evident through annual family conferences that help families stay informed about research developments and provide emotional support.
Despite the strong financial standing and positive user feedback, CRF faces the ongoing challenge of raising awareness and funds for a rare condition. While the foundation has successfully raised over $67 million and issued numerous grants, the need for continued support and research is paramount for achieving breakthroughs in treatment. Overall, CRF is recognized as a leading force in the fight against cystinosis, inspiring confidence and dedication among its supporters.
This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.
What do the Facebook reviews say about Cystinosis Research Foundation?
94% of 60 reviewers on Facebook recommend the Cystinosis Research Foundation. Many express their appreciation for the organization, highlighting its commitment to a meaningful cause. Supporters feel that the foundation is effective in raising awareness and funding for research related to cystinosis.
Reviewers commend the foundation for its transparent operations and dedication to making a difference in the lives of those affected by the condition. Overall, there is a strong sense of community among those involved, and participants feel valued and supported in their efforts.
In summary, the Cystinosis Research Foundation is viewed positively, with many recognizing its vital role in advancing research and offering hope to individuals and families impacted by cystinosis.
This AI summary has been generated from reviews found on Facebook.
Is Cystinosis Research Foundation legitimate?
Cystinosis Research Foundation is a legitimate nonprofit organization registered as a 501(c)(3) entity. Cystinosis Research 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: $64,285
For more financial information, click here
Official website here: www.cystinosisresearch.org
What is the mission statement of Cystinosis Research Foundation?
The Cystinosis Research Foundation (CRF) is dedicated to supporting and funding research aimed at finding better treatments and ultimately, a cure for cystinosis. Their mission is to accelerate the research process by awarding grants bi-annually, ensuring there's no gap in funding for new, cutting-edge projects. CRF's commitment is to improve the quality of life for individuals living with cystinosis, not just children, but also adults. Their goal is to find more effective treatments, including a potential cure, for this devastating disease.
Official website here: www.cystinosisresearch.org
Who is the CEO of Cystinosis Research Foundation?
Marcu Alexander is the Trustee of Cystinosis Research Foundation.
Official website here: www.cystinosisresearch.org
What is the revenue of Cystinosis Research Foundation?
Cystinosis Research Foundation's revenue in 2023 was $3,244,975.
Official website here: www.cystinosisresearch.org
Who are the executives of Cystinosis Research Foundation and what are their salaries?
The average compensation at Cystinosis Research Foundation during 2023 was $64,285. There is 1 employee and 5 volunteers at Cystinosis Research Foundation.
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Official website here: www.cystinosisresearch.org
Where can I find the form 990 for Cystinosis Research Foundation?
Cystinosis Research Foundation's most recent form 990 was submitted in 2023 and can be accessed here.
Official website here: www.cystinosisresearch.org
Learn more at the official website: www.cystinosisresearch.org
Mission Statement of Cystinosis Research Foundation
The Cystinosis Research Foundation, abbreviated as CRF, is a dedicated organization with a mission to support and advance research aimed at improving treatments and ultimately finding a cure for cystinosis. This nonprofit entity is deeply committed to funding cutting-edge research projects bi-annually, ensuring a continuous flow of innovation in the quest to improve the lives of individuals affected by cystinosis, both children and adults. The CRF's objective is not just to alleviate the symptoms of this devastating disease but to eventually eradicate it altogether. By actively funding research, CRF plays a crucial role in the scientific community, accelerating the process of discovering better treatments and potential cures for cystinosis.
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Impact
October, 2024
The Cystinosis Research Foundation (CRF) has significantly advanced the understanding and treatment of cystinosis since its establishment in 2003. By raising over $67 million and strategically investing in research, CRF has become the leading funder for cystinosis research worldwide, facilitating groundbreaking studies and collaborative efforts among researchers across 12 countries.
CRF's impact is evident through its robust grant-making program, which has awarded 228 research studies and facilitated the publication of 107 articles in prestigious journals. The foundation's funding has played a crucial role in various breakthroughs, including the development of Procysbi, a delayed-release form of a life-saving medication approved by the FDA in 2013, marking it as the most significant advancement in cystinosis treatment in three decades.
The foundation has also pioneered stem cell and gene therapy research. In collaboration with researchers at UC San Diego, CRF's early and sustained financial support allowed for the initiation of pivotal clinical trials, leading to the treatment of several cystinosis patients. If successful, these therapies could either halt the progression of the disease or potentially cure it, representing a monumental leap in treatment options.
Furthermore, CRF's research has broader implications, as many discoveries made in the search for cystinosis treatments are applicable to other genetic and systemic diseases, thus benefiting a much larger patient population.
Through initiatives like the Day of Hope Family Conference and the Cure Cystinosis International Registry, CRF fosters a supportive community that empowers patients and their families with education and resources. The annual symposium brings together experts, promoting collaboration and accelerating the research process.
Overall, CRF embodies a strong commitment to not only improving the quality of life for those affected by cystinosis but also to paving the way for innovative treatments that could have far-reaching effects beyond the cystinosis community.
This information is meant to be a general summary of Cystinosis Research 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 2023.
- Investment Income: $350,852
- Gross Receipts: $3,244,975
Assets and Liabilities:
- Total Assets: $10,305,666
- Total Liabilities: $1,643,150
- Net Assets: $8,662,516
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Organization Details
Founding Year
2003
Phone
(949) 223-7610Principal Officer
Marcu Alexander
Main Address
19200 VON KARMAN AVENUE 920, IRVINE, CA, 92612
Website
www.cystinosisresearch.orgNTEE Category
Code: H80 - Medical research
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