CYSTINOSIS RESEARCH FOUNDATION

Financials

From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.

Officers, directors and key employees

As listed on the 990 for the year ended June 30, 2025, highest compensation first.

Address and contacts

Address (IRS master file)

3501 AMBOREE RD STE 6100 N TOWER, NEWPORT BEACH, CA 92660-0000

In care of

% GEOFFREY L STACK

Signed the 990

GEOFFREY STACK, Trustee

Phone

(949) 223-7610

Website

www.cystinosisresearch.org

Return prepared by

Montgomery Glick & Company

California records

California keeps its own records of charities and corporations. Search them by EIN 32-0067668 or by the name CYSTINOSIS RESEARCH FOUNDATION.

Attorney General, Registry of Charities and Fundraisers

Registration status and filed reports (CT-TR-1, RRF-1)

Secretary of State, bizfile Online

Corporation status, entity number, agent for service

Franchise Tax Board

Entity status letter (state tax exemption, good standing)

Mission

CRF is committed to finding a cure through an aggressively funded research agenda. CRF awards research grants bi-annually to accelerate the research process and to ensure that there is never a gap in funding new, cutting-edge research projects. CRF is dedicated to improving the quality of life for cystinosis patients and to finding better treatments, including a cure, for our adults and children living with cystinosis.

Program accomplishments

• EDUCATIONThe Cystinosis Research Foundation is dedicated to educating the cystinosis community, the public and the medical community about cystinosis to ensure early diagnosis and immediate and proper treatment.NATALIES WISHNatalies wish, To have my disease go away forever, was the driving force and inspiration that led to the establishment of the Cystinosis Research Foundation (CRF) in 2003. We knew at that moment that we needed to make every effort to make Natalies wish and the wish of others with cystinosis a reality.HISTORY AND RESEARCHCystinosis is a rare, metabolic, genetic disease that afflicts approximately 2,500 children and adults worldwide. CRF is increasingly focused on funding clinical and translational research which is crucial to finding new treatments and a cure for cystinosis. CRF is committed to prioritizing and aggressively supporting research that has the potential to significantly improve the quality of life for children and adults with cystinosis. RESEARCH GIVES US HOPEWe firmly believe that funding and supporting research gives our community hope for a brighter future for those living with cystinosis. Hope allows us to live with cystinosis until the day a cure is found. Since 2003, the Cystinosis Research Foundation (CRF) has raised over $73 million and has become the worlds leading fund provider of cystinosis research. CRF has strategically and aggressively invested millions of dollars into the CRF research program creating a thriving and collaborative global research community that has changed the course of cystinosis. From the beginning, all CRF operating costs have been privately underwritten, so 100 percent of all donations received by CRF go to support cystinosis research. CRF HAS CREATED A CONTINUOUS CYCLE OF RESEARCH STUDIES BY SEEKING NEW RESEARCH APPLICATIONS TWICE A YEAR. We are pleased to announce that during the 12-month period ending June 30, 2025, CRF announced seven new grantS, AND GRANT PAYMENTS totaling $2,326,589,TO bring us that much closer to better treatments and a cure. RESEARCH PROGRESSFROM THE START OF THE FOUNDATION, WE HAVE UNDERSTOOD THAT FUNDING BASIC AND BENCH RESEARCH WAS important to understanding the cystinosis. Over the years, as discoveries were made in the lab, CRF began funding clinical research, and now we are translating the DATA FROM the clinical studies To the patients. Our strategy of providing seed money to talented researchers has been successful. Our first project involved funding researchers who were focused on a new treatment. CRF provided grants that funded every bench and clinical trial that led to the discovery of a delayed-release form of the life-saving medication for cystinosis. That medication, Procysbi was approved by the FDA on April 30, 2013, and is considered the most significant advancement in the treatment of cystinosis in 30 years. In 2007, CRF began funding Dr. Stphanie Cherqui, at UC San Diego who was focused on stem cell and gene therapy research. As a direct result of CRFs early and continuous funding, in December 2018, the FDA approved a clinical trial to assess the efficacy and safety of a stem cell and gene therapy treatment for cystinosis patients. In October 2019, the first cystinosis patient received the stem cell gene therapy treatment. In 2020, two patients received the therapy. In November 2021, the fourth patient received the treatment and in March 2022, the fifth patient received the treatment. The sixth and final patient in Phase I/II of the clinical trial was treated in October 2022. THE GRANTS AWARDED TO DR. CHERQUI FOR HER STEM CELL WORK HAVE BEEN LEVERAGED BY MULTI-MILLION-DOLLAR GRANTS FROM OTHER FUNDING AGENCIES. IF THIS TREATMENT WORKS, IT COULD STOP THE PROGRESSION OF CYSTINOSIS OR BE THE CURE FOR CYSTINOSIS.Since cystinosis is a systemic disease and affects every cell, CRF has targeted multiple areas of research including kidney disease, muscle wasting, neurological issues, corneal cystinosis, and stem cell and gene therapy, all with the goal of finding better treatments and a cure for cystinosis. CRF RESEARCH LEADS TO NEW DISCOVERIES IN OTHER MORE PREVALENT DISEASESAlthough CRF is focused on cystinosis research, discoveries made by CRF-funded researchers are being applied to other diseases including Friedreichs ataxia, Danon disease, Alzheimers disease, and other genetic and systemic diseases like cystinosis. As a result, breakthroughs initially aimed at helping the cystinosis community are now offering potential benefits to patients affected by other debilitating diseases. By advancing understanding of the underlying mechanisms of cystinosis, we have identified potential treatments that are relevant to other disease communities, creating pathways to cures for their communities. We are changing lives and giving hope to people far beyond the cystinosis community.CRF FAMILIES AND PARTNERSThe Cystinosis Research Foundation has witnessed tremendous growth over the years as cystinosis families have joined our fundraising efforts. Cystinosis families from all over the world have embraced the cystinosis cause and have enthusiastically raised funds to support cystinosis research through CRF. Their commitment to research has not only raised significant funds for research, but also created a strong and united global community of action. We have found strength in numbers and our joint effort gives us a renewed sense of community and purpose.DAY OF HOPE CONFERENCEEach year the Cystinosis Research Foundation hosts the Day of Hope Family Conference. In 2025, 59 families from around the world gathered to share their stories, hopes, and dreams and to build life-long friendships. Leading CRF-funded researchers attended the conference and updated the cystinosis community on their research progress including progress on gene and stem cell therapies, novel eye research, and neurological research. The conference educates cystinosis families about current and ongoing research and offers them hope that brighter days are ahead for cystinosis patients. CURE CYSTINOSIS INTERNATIONAL REGISTRYLaunched in April 2012, the Cure Cystinosis International Registry (CCIR) is an important program in the cystinosis community. The registry tracks patients natural history data, collects data about current treatments, identifies known and unknown medical complications, and collects information about quality-of-life issues. The CCIR is a central hub of information for the global community. The deidentified patient data from the registry can be shared with cystinosis clinicians, researchers, and scientists who are pursuing research focused on better treatments and a cure for cystinosis. Today, more than 171 cystinosis patients have registered with CCIR. CRF INTERNATIONAL RESEARCH SYMPOSIUMCRFs International Research Symposium is held every two years and is a highlight for cystinosis researchers. Attendees are CRF-funded researchers and scientists from around the world. Approximately 60 cystinosis experts from leading international universities and research institutions are invited to give presentations about their work. Attendees share their research progress and are encouraged to form collaborations to accelerate the research process. The symposium has solidified the global research community and created a synergistic research community working in partnership with CRF.
  Expenses $3,072,586

What it must file and when

IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in June, so each return is due on the 15th day of the 5th month after that.

IRS record

EIN

32-0067668

Tax-exempt status

501(c)(3): Charitable, religious, educational or scientific organization

Foundation status

Publicly supported organization (170(b)(1)(A)(vi))

Donations deductible (Pub 78)

Public charity, 50% deduction limit

Exempt since

2003

Accounting year ends

June

Files

Form 990 or 990-EZ

Category (NTEE)

Medical research (H80)

Assets (IRS master file)

$10,029,960

Income (IRS master file)

$3,229,152

Filing history

990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 32-0067668).

Questions about CYSTINOSIS RESEARCH FOUNDATION

What is the EIN of CYSTINOSIS RESEARCH FOUNDATION?

The employer identification number (EIN) of CYSTINOSIS RESEARCH FOUNDATION is 32-0067668.

Is CYSTINOSIS RESEARCH FOUNDATION tax-exempt?

Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 2003.

Are donations to CYSTINOSIS RESEARCH FOUNDATION tax-deductible?

Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).

Which annual return does CYSTINOSIS RESEARCH FOUNDATION file?

Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.

When is the next return of CYSTINOSIS RESEARCH FOUNDATION due?

The return for tax year 2025 (the year ending June 30, 2026) is due November 16, 2026. Form 8868 extends it by six months; the 990-N cannot be extended.

When did CYSTINOSIS RESEARCH FOUNDATION last file with the IRS?

The latest return in the IRS public files is the 990 for the year ended June 2025.

Who are the officers and directors of CYSTINOSIS RESEARCH FOUNDATION?

The 990 for the year ended June 30, 2025 lists 17 people; 0 received compensation from the organization.

How much revenue does CYSTINOSIS RESEARCH FOUNDATION have?

On its 990 for the year ended June 30, 2025 it reported revenue of $3,177,424, expenses of $3,438,007 and total assets of $10,029,960 at year end.

Other nonprofits in NEWPORT BEACH

• KURE IT INC
  EIN 26-4343040 · last filed 990 for 2024
• DOWN SYNDROME FOUNDATION OF ORANGE COUNTY
  EIN 33-0948722 · last filed 990 for 2025
• GARZA FOUNDATION
  EIN 35-2740014 · last filed 990-PF for 2025
• QUEEN OF HEARTS FOUNDATION
  EIN 33-0912223 · last filed 990-EZ for 2025
• THE MUSIC-HEALS FOUNDATION
  EIN 20-1770654 · last filed 990-EZ for 2024
• DOWN SYNDROME EDUCATION USA
  EIN 26-2566125 · last filed 990 for 2023
• GOLDILOCKS ANESTHESIA FOUNDATION
  EIN 27-0152657 · last filed 990-N for 2025
• HOAG MEMORIAL HOSPITAL PRESBYTERIAN
  EIN 95-1643327 · last filed 990 for 2024

All nonprofits in NEWPORT BEACH · California · Medical research