International Foundation For Cdkl5 Research

Organization Overview

International Foundation For Cdkl5 Research is located in Wadsworth, OH. The organization was established in 2010. According to its NTEE Classification (T30) the organization is classified as: Public Foundations, under the broad grouping of Philanthropy, Voluntarism & Grantmaking Foundations and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. International Foundation For Cdkl5 Research is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2021, International Foundation For Cdkl5 Research generated $678.0k in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 12.6% each year . All expenses for the organization totaled $487.9k during the year ending 12/2021. While expenses have increased by 2.8% per year over the past 7 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.

Since 2014, International Foundation For Cdkl5 Research has awarded 46 individual grants totaling $2,767,616. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2021

Describe the Organization's Mission:

Part 3 - Line 1

TO FUND RESEARCH AIMED AT FINDING A CURE FOR CDKL5, A RARE GENETIC DISORDER. A FAMILY CONFERENCE IS FUNDED BY THE ORGANIZATION EVERY TWO YEARS TO PROVIDE SUPPORT TO FAMILIES WHOSE LOVED ONES SUFFER FROM CDKL5.

Describe the Organization's Program Activity:

Part 3 - Line 4a

A NUMBER OF FUNDRAISERS WERE HELD IN 2021. IN ADDITION, CONTRIBUTIONS WERE RECEIVED FROM NUMEROUS INDIVIDUALS, CORPORATIONS, AND FOUNDATIONS. AS A RESULT, GRANTS TOTALING $370,491 WERE MADE DURING 2021 TO FUND RESEARCH THAT WILL LEAD TO A CURE FOR THIS VERY DEBILITATING DISEASE IN THE NEAR FUTURE. THE ORGANIZATION'S GOALS INCLUDE AGGRESSIVE RESEARCH, STUDIES TO IMPROVE THE QUALITY OF LIFE FOR CHILDREN WITH CDKL5, AND TESTING OF COMPOUNDS TO IDENTIFY NEUROLOGIC MODIFIERS.


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Board, Officers & Key Employees

Name (title)Compensation
Karen Utley
President
$0
Rick Upp
Vice President
$0
Paul Miller
Secretary
$0
Amanda Jaksha
Treasurer
$0
Miriam Blase
Director
$0
Kristin Kozera
Director
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$88,107
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$579,965
Noncash contributions included in lines 1a–1f $32,912
Total Revenue from Contributions, Gifts, Grants & Similar$668,072
Total Program Service Revenue$0
Investment income $13
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $0
Net Income from Fundraising Events $0
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $678,047

Grants Awarded

Over the last fiscal year, International Foundation For Cdkl5 Research has awarded $284,491 in support to 6 organizations.

Grant RecipientAmount

TRUSTEES UNIVERSITY OF PENNSYLVANIA

Org PageRecipient Profile

Philadelphia, PA

PURPOSE: Research

$100,000

BOSTON CHILDREN'S HOSPITAL

Org PageRecipient Profile

Washington, DC

PURPOSE: Research

$67,500

UNIVERSITY OF COLORADO

Org PageRecipient Profile

Denver, CO

PURPOSE: Research

$50,000

REGENTS UNIVERSITY OF CALIFORNIA

Org PageRecipient Profile

Oakland, CA

PURPOSE: Research

$36,791

WASHINGTON UNIVERSITY SCHOOL OF MEDICINE

Org PageRecipient Profile

Saint Louis, MO

PURPOSE: Research

$25,000

UNIVERSITY OF NEBRASKA

Org PageRecipient Profile

Lincoln, NE

PURPOSE: Research

$5,200
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 6 grants that International Foundation For Cdkl5 Research has recieved totaling $25,575.

Awarding OrganizationAmount
American Online Giving Foundation Inc

Newark, DE

PURPOSE: GENERAL SUPPORT

$18,518
Amazonsmile Foundation

Seattle, WA

PURPOSE: GENERAL SUPPORT

$3,757
Jp Morgan Chase Foundation

New York, NY

PURPOSE: GENERAL OPERATING SUPPORT

$2,500
Haushalter Family Foundation

Kenton, OH

PURPOSE: GENERAL & UNRESTRICTED

$500
Monster Energy Cares

Corona, CA

PURPOSE: EMPLOYEE MATCHING

$200
Essendant Charitable Foundation

Deerfield, IL

PURPOSE: GENERAL FUND

$100
View Grant Recipient Profile

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