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
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.
Here 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 are 1 employees and 5 volunteers at Cystinosis Research Foundation.
Here are 17 key members and their salaries:
- Nancy J Stack (Chair - Trustee)
- Geoffrey Stack (Vice Chair-Ttee) [Trustee/Director]
- Donald L Solsby (Treasurer - Tte) [Trustee/Director]
- Marcu Alexander (Trustee)
- Stephanie Cherqui Phd (Trustee)
- Bruce Crair (Trustee)
- Jill Emerson Cpa (Trustee)
- Denice Flerchinger (Trustee)
- Clay Emerson Phd Pe Cfm (Trustee)
- Angela Kirchoff (Trustee)
- Stephen L Jenkins (Trustee)
- David W Mossman (Trustee)
- Kevin Partington (Trustee)
- Teresa Partington (Trustee)
- Kristen Murray (Trustee)
- Brian Sturgis (Trustee)
- Barbara Kulyk (Trustee)
Official website here: www.cystinosisresearch.org
Where can I find the form 990 for Cystinosis Research Foundation?
The 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.
Impact
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.
Thursday, August 15, 2024
The Cystinosis Research Foundation (CRF) has had a significant impact in the field of cystinosis research since its establishment in 2003. CRF's dedicated focus on funding bench, clinical, and translational research has led to groundbreaking discoveries and advancements in the understanding and treatment of cystinosis.
CRF has raised over $67 million since its inception, becoming the leading provider of funds for cystinosis research worldwide. By strategically investing in research projects, CRF has fostered a collaborative global research community that has transformed the landscape of cystinosis research.
Through its grant program, CRF has supported 228 studies at leading research institutions in 12 countries. These studies have resulted in 107 publications in prestigious journals, contributing to the greater understanding of cystinosis and potential treatment options.
Notably, CRF's early funding of research into a new delayed-release medication for cystinosis led to the development and FDA approval of Procysbi, a significant breakthrough in cystinosis treatment. Additionally, CRF's support of stem cell and gene therapy research has paved the way for potentially groundbreaking treatments that could halt or even cure cystinosis.
Beyond its direct impact on cystinosis research, CRF's work has also had a ripple effect on other related disorders and diseases. Many of the discoveries made by CRF-funded researchers are being applied to other medical conditions, potentially benefiting millions of individuals worldwide.
The annual Day of Hope Family Conference, the establishment of the Cure Cystinosis International Registry, and the biennial International Research Symposium are just a few examples of CRF's efforts to bring together researchers, clinicians, patients, and families to share knowledge, collaborate, and drive progress in the fight against cystinosis.
Overall, the Cystinosis Research Foundation's commitment to funding innovative research, fostering collaboration, and advocating for the cystinosis community has had a profound impact on advancing the understanding and treatment of this rare disease.
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.
- Assets and Liabilities:
Organization Details
Founding Year
2003
Phone
(949) 223-7610
Principal Officer
Marcu Alexander
Main Address
19200 VON KARMAN AVENUE 920, IRVINE, CA, 92612
Website
www.cystinosisresearch.org
NTEE Category
Code: H80 - Medical research
If you are a representative of Cystinosis Research Foundation and wish to learn more about how Give Freely can help you raise funds, please click here: https://givefreely.com/nonprofits/. Our services are offered at no cost to your organization.