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.
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.
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.
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.
$149K
$977K
$716K
$357K
Most grants fall between $30K and $86K, with a median of $50K.
25th Percentile
$30K
Median
$50K
75th Percentile
$86K
About 0% of grants go to recipients in PA.
Karen Utley
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All recent grants in the data went to U.S. recipients. Pennsylvania is the top state by grant count, with Children’s Hospital Philadelphia and the Orphan Disease Center at University of Pennsylvania both in Philadelphia. Other recipient cities include Boston, Houston, Denver, Saint Louis, Nashville, and New York. Even with a national scope, the pattern is concentrated in major medical and research centers rather than the foundation’s own Ohio headquarters.
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.
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.
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.
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.
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.
2025
Source: IRS Form 990-PF, fiscal year 2025.
Current and upcoming funding from International Foundation for Cdkl5 Research that your nonprofit may be able to apply for.
Who can apply: Available to junior investigators. Materials must be submitted in English. Collaborative and multidisciplinary projects are encouraged. Indirect costs are not supported.
Deadline: Rolling request for proposals; the timeline for targeted RFPs will be announced at a future date.
Who can apply: Available to clinical research fellows and investigators conducting eligible CDKL5 deficiency disorder research. Materials must be submitted in English. Collaborative and multidisciplinary approaches are encouraged. Indirect costs are not supported.
Deadline: Rolling request for proposals; the timeline for targeted RFPs will be announced at a future date.
Who can apply: Available to established and junior investigators. Materials must be submitted in English. Collaborative and multidisciplinary projects are encouraged. Funding may support PI, technical staff, collaborators, supplies, and animal costs; indirect costs are not supported.
Deadline: Rolling request for proposals; the timeline for targeted RFPs will be announced at a future date.
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Most recent grants reported to the IRS.
| 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 |
University of Colorado
$7,964Research