What kinds of work does International Foundation For CDKL5 Research fund?

It funds CDKL5 Deficiency Disorder research and related support, including basic research on CDKL5 function, disease models, natural history studies, biomarkers, clinical outcome measures, clinical trial readiness, patient registries, family support services, advocacy, and awareness.

How large are its typical grants?

The typical grant size is $30,000 at the 25th percentile, $50,000 at the median, and $85,599 at the 75th percentile. Recent awards range from $7,964 to $187,884 in the listed grant record.

Does it fund outside the United States?

The grant record shown here is entirely U.S.-based, with 11 grants and 100% of recipients in the United States. Its active programs also describe an international or global scope for some research opportunities.

Can researchers apply directly?

Yes. The active programs include an IFCR Grant Program and a Request for Proposals page for research grants, and some listed opportunities accept unsolicited applications.

Are there repeat grantees?

Yes. Boston Children’s Hospital appears with awards in both 2023 and 2024, and Children’s Hospital Philadelphia also received grants in both years, indicating recurring support for some research partners.

International Foundation for Cdkl5 Research

Name: International Foundation for Cdkl5 Research — grants, 990 financials & funding data
Creator: Kindora

ActivePhilanthropy & Voluntarism

Wadsworth, OHWebsite9792653411

About International Foundation for Cdkl5 Research

Turning hope into action by supporting families affected by CDKL5 Deficiency Disorder and funding research, clinical trial readiness, and resources to develop life-changing treatments and a cure.

Focus Areas

Rare disease researchNeurology / EpilepsyClinical trialsPatient registriesFamily support servicesAdvocacy and awareness

Who They Fund

individuals affected by CDKL5 Deficiency Disorder (CDD)families and caregivers of people with CDDclinical and research community focused on rare neurological diseases

Funding Style

disease-specific research fundingbench-to-bedside / translational research

About International Foundation for Cdkl5 Research

International Foundation For CDKL5 Research centers its giving on CDKL5 Deficiency Disorder, pairing research funding with family support and resources aimed at treatment development and a cure. The most distinctive part of its recent grantmaking is the repeated support for hospital- and university-based research teams working on CDKL5 function, disease models, natural history, biomarkers, and clinical trial readiness. In the latest grants list, Boston Children’s Hospital received $187,884 in 2023 and another $72,884 in 2024, showing continued backing for the same research institution. Children’s Hospital Philadelphia also appears twice, with $50,000 in both 2023 and 2024. The foundation’s program structure reinforces that pattern: its active grant programs include seed grants, junior investigator grants, and clinical research fellowships, along with requests for proposals for CDKL5-related research. Its stated focus includes rare disease research, neurology and epilepsy, clinical trials, patient registries, family support services, advocacy, and awareness. The grant record points to a funder built around translational work, with support moving from basic science and disease models toward clinical readiness for individuals and families affected by CDD.

What International Foundation for Cdkl5 Research Funds

In translational research, the foundation gave $105,000 to Baylor College of Medicine for research and $65,000 to Washington University School of Medicine for research, supporting academic teams working on CDKL5-related science. Clinical research is another clear focus: Children’s Hospital Colorado received $98,314 for research, and Vanderbilt University Medical Center received $35,000, both in 2024. Patient-facing infrastructure also appears in the grant record. The Orphan Disease Center at University of Pennsylvania received $10,000 in 2024, aligning with the foundation’s emphasis on tools and resources that advance therapies and clinical readiness. In addition, NYU School of Medicine received $25,000 in 2024, adding to a pattern of support for medical-school-based investigators and research programs.

How International Foundation for Cdkl5 Research Gives

Typical grant size sits at $30,000 at the 25th percentile, $50,000 at the median, and $85,599 at the 75th percentile. The recent record includes both first-time and repeated support: Boston Children’s Hospital and Children’s Hospital Philadelphia each received grants in multiple years, and several other institutions appear once. The foundation is a grantmaking nonprofit rather than an individual-giving vehicle; it does not fund individuals and does not make program-related investments. Its active programs include rolling request-for-proposal pathways for Seed Grants, Junior Investigator Grants, Clinical Research Fellowships, and broader research grants. Unsolicited applications are accepted in some listed programs.

Financial Snapshot

Annual Giving

$149K

Total Assets

$977K

Total Revenue

$716K

Total Expenses

$357K

Typical Grant Size

Most grants fall between $30K and $86K, with a median of $50K.

25th Percentile

$30K

Median

$50K

75th Percentile

$86K

Geographic Reach

National7 states funded

About 0% of grants go to recipients in PA.

Funding intensity

Low

High

Headquarters

Leadership

Karen Utley

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International Foundation for Cdkl5 Research

About International Foundation for Cdkl5 Research

Focus Areas

Who They Fund

Funding Style

About International Foundation for Cdkl5 Research

What International Foundation for Cdkl5 Research Funds

How International Foundation for Cdkl5 Research Gives

Financial Snapshot

Typical Grant Size

Geographic Reach

Leadership

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Topics

Where International Foundation for Cdkl5 Research Makes Grants

Frequently Asked Questions About International Foundation for Cdkl5 Research

What kinds of work does International Foundation For CDKL5 Research fund?

How large are its typical grants?

Does it fund outside the United States?

Can researchers apply directly?

Are there repeat grantees?

Open Grant Opportunities

IFCR Grant Program (Seed Grants, Junior Investigator Grants, Clinical Research Fellowships)

Recent Grants

Recipient	Location	Amount	Year	Purpose
University of Oregon	Eugene, OR	$55,874	2025	Research
Children's Hospital Philadelphia	Philadelphia, PA	$50,000	2025	Research
Washington University School of Medicine	Saint Louis, MO	$30,000	2025	Research
Orphan Disease Center at University of Pennsylvania	Philadelphia, PA	$13,400	2025	Research
Boston Children's Hospital	Boston, MA	$72,884	2024	72884
Children's Hospital Philadelphia	Philadelphia, PA	$50,000	2024	Research
Vanderbilt University Medical Center	Nashville, TN	$35,000	2024	35000
NYU School of Medicine	New York, NY	$25,000	2024	25000
Orphan Disease Center at University of Pennsylvania	Philadelphia, PA	$10,000	2024	10000
Boston Children's Hospital	Boston, MA	$187,884	2023	Research
Baylor College of Medicine	Houston, TX	$105,000	2023	Research
Children's Hospital Colorado	Denver, CO	$98,314	2023	Research
Washington University School of Medicine	Saint Louis, MO	$65,000	2023	Research
Children's Hospital Philadelphia	Philadelphia, PA	$50,000	2023	Research
University of Colorado	Denver, CO	$7,964	2023	Research

International Foundation for Cdkl5 Research

About International Foundation for Cdkl5 Research

Focus Areas

Who They Fund

Funding Style

About International Foundation for Cdkl5 Research

What International Foundation for Cdkl5 Research Funds

How International Foundation for Cdkl5 Research Gives

Financial Snapshot

Typical Grant Size

Geographic Reach

Leadership

Unlock Deep Analysis

See Similar Funders

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The Grant Brief

Topics

Where International Foundation for Cdkl5 Research Makes Grants

Frequently Asked Questions About International Foundation for Cdkl5 Research

What kinds of work does International Foundation For CDKL5 Research fund?

How large are its typical grants?

Does it fund outside the United States?

Can researchers apply directly?

Are there repeat grantees?

Open Grant Opportunities

IFCR Grant Program (Seed Grants, Junior Investigator Grants, Clinical Research Fellowships)

Recent Grants