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    5. International Foundation for Cdkl5 Research
    Logo de International Foundation for Cdkl5 Research

    International Foundation for Cdkl5 Research

    ActivoPhilanthropy & Voluntarism
    Wadsworth, OHSitio web9792653411

    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

    $193K

    Total Assets

    $761K

    Total Revenue

    $639K

    Total Expenses

    $415K

    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.

    Intensidad de financiamiento
    Baja
    Alta
    Sede

    Leadership

    Karen Utley

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    clinical trial readiness support
    patient- and family-centered services

    Topics

    CDKL5 gene-focused researchCDKL5 Deficiency Disorder (CDD) basic molecular and cellular researchClinical research and natural history studies for CDDClinical trial readiness (outcome measures, biomarkers)Patient support, family resources, and education

    Where International Foundation for Cdkl5 Research Makes Grants

    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.

    Frequently Asked Questions About International Foundation for Cdkl5 Research

    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.

    Latest 990 Filing

    2024

    Source: IRS Form 990-PF, fiscal year 2024.

    Oportunidades de Subvenciones Abiertas

    Financiamiento actual y próximo de International Foundation for Cdkl5 Research al que tu organización sin fines de lucro podría postularse.

    Abierta ahoraRecepción continua / abierta

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

    basic researchclinical researchCDKL5 deficiency disorder+7 más

    ¿Quién puede postularse? Available to both established and junior investigators. Materials must be submitted in English. IFCR encourages collaborative and multidisciplinary projects. Indirect costs are not supported.

    Fecha límite: Rolling request for proposals; targeted RFP timelines to be announced in the future.

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    Recent Grants

    Most recent grants reported to the IRS.

    RecipientLocationAmountYearPurpose
    Boston Children's HospitalBoston, MA$72,884202472884
    Children's Hospital PhiladelphiaPhiladelphia, PA$50,0002024Research
    Vanderbilt University Medical CenterNashville, TN$35,000202435000
    NYU School of MedicineNew York, NY$25,000202425000
    Orphan Disease Center at University of PennsylvaniaPhiladelphia, PA$10,000202410000
    Boston Children's HospitalBoston, MA$187,8842023Research
    Baylor College of MedicineHouston, TX$105,0002023Research
    Children's Hospital ColoradoDenver, CO$98,3142023Research
    Washington University School of MedicineSaint Louis, MO$65,0002023Research
    Children's Hospital PhiladelphiaPhiladelphia, PA$50,0002023Research
    University of ColoradoDenver, CO$7,9642023Research

    Boston Children's Hospital

    $72,884
    Boston, MA2024

    72884

    Children's Hospital Philadelphia

    $50,000
    Philadelphia, PA2024

    Research

    Vanderbilt University Medical Center

    $35,000
    Nashville, TN2024

    35000

    NYU School of Medicine

    $25,000
    New York, NY2024

    25000

    Orphan Disease Center at University of Pennsylvania

    $10,000
    Philadelphia, PA2024

    10000

    Boston Children's Hospital

    $187,884
    Boston, MA2023

    Research

    Baylor College of Medicine

    $105,000
    Houston, TX2023

    Research

    Children's Hospital Colorado

    $98,314
    Denver, CO2023

    Research

    Washington University School of Medicine

    $65,000
    Saint Louis, MO2023

    Research

    Children's Hospital Philadelphia

    $50,000
    Philadelphia, PA2023

    Research

    University of Colorado

    $7,964
    Denver, CO2023

    Research