Cystinosis Research Network Incorporated

Organization Overview

Cystinosis Research Network Incorporated is located in Lake Forest, IL. The organization was established in 1996. According to its NTEE Classification (B99) the organization is classified as: Education N.E.C., under the broad grouping of Education and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Cystinosis Research Network Incorporated 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, Cystinosis Research Network Incorporated generated $543.2k in total revenue. The organization has seen a slow decline revenue. Over the past 7 years, revenues have fallen by an average of (1.8%) each year. All expenses for the organization totaled $412.1k during the year ending 12/2021. As we would expect to see with falling revenues, expenses have declined by (7.2%) per year over the past 7 years. You can explore the organizations financials more deeply in the financial statements section below.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2021

Describe the Organization's Mission:

Part 3 - Line 1

THE CYSTINOSIS RESEARCH NETWORK IS AN ALL VOLUNTEER, NON-PROFIT ORGANIZATION DEDICATED TO SUPPORTING AND ADVOCATING RESEARCH, PROVIDING FAMILY ASSISTANCE AND EDUCATING THE PUBLIC AND MEDICAL COMMUNITIES ABOUT CYSTINOSIS.

Describe the Organization's Program Activity:

Part 3 - Line 4a

THE ORGANIZATION ESTABLISHES AND FUNDS FELLOWSHIPS AND RESEARCH GRANTS FOCUSING ON CLINICAL AND RESEARCH TRAINING IN CYSTINOSIS.


THE ORGANIZATION RAISES AWARENESS AND REINFORCES STRONG RELATIONSHIPS THROUGH REPRESENTATION AT NATIONAL MEDICAL CONFERENCES, AFFILIATION WITH OTHER ORGANIZATIONS, PUBLICATION OF PERIODIC NEWSLETTERS AND AWARDS OR EDUCATIONAL SCHOLARSHIPS TO INDIVIDUALS WITH CYSTINOSIS AND THEIR SIBLINGS.


THE ORGANIZATION PROVIDES INFORMATION AND OPPORTUNITIES TO NETWORK FOR INDIVIDUALS WITH CYSTINOSIS AND THEIR FAMILIES THROUGH PARTICIPATION IN A BIENNIAL CONFERENCE ON CYSTINOSIS. IT ALSO SUPPORTS NEWLY DIAGNOSED AND EXISTING FAMILIES BY PROVIDING ACCESS TO WORLD EXPERTS VIA ADVISORY BOARDS, MODERATION OF AN EMAIL SUPPORT GROUP AND INFORMATION PACKETS.


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Board, Officers & Key Employees

Name (title)Compensation
Jenni Sexstone
Treasurer - Term
$0
Karen Gledhill
Secretary
$0
Christy Greeley
Exec Dir & Vp, Research
$0
Tim Wyman
Treasurer
$0
Johnathan Dicks
Vp, Development
$0
Jen Wyman
Vp, Family Support
$0

Financial Statements

Statement of Revenue
Federated campaigns$334
Membership dues$0
Fundraising events$0
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$542,163
Noncash contributions included in lines 1a–1f $6,750
Total Revenue from Contributions, Gifts, Grants & Similar$542,497
Total Program Service Revenue$0
Investment income $713
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 $543,210

Grants Awarded

Over the last fiscal year, Cystinosis Research Network Incorporated has awarded $149,271 in support to 2 organizations.

Grant RecipientAmount

ALBERT EINSTEIN COLLEGE OF MEDICINE

Org PageRecipient Profile

Bronx, NY

PURPOSE: RESEARCH GRANT

$77,571

THE REGENTS OF THE UNIVERSITY OF CALIFORNIA

Org PageRecipient Profile

Oakland, CA

PURPOSE: RESEARCH GRANT

$71,700
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 6 grants that Cystinosis Research Network Incorporated has recieved totaling $35,452.

Awarding OrganizationAmount
Magistro Foundation Inc

Pennington, NJ

PURPOSE: UNRESTRICTED GENERAL

$20,000
Raymond James Charitable Endowment Fund

St Petersberg, FL

PURPOSE: GENERAL SUPPORT

$14,400
Amazonsmile Foundation

Seattle, WA

PURPOSE: GENERAL SUPPORT

$842
Bank Of America Charitable Foundation Inc

Charlotte, NC

PURPOSE: OPERATIONAL SUPPORT

$90
Bank Of America Charitable Foundation Inc

Charlotte, NC

PURPOSE: OPERATIONAL SUPPORT

$60
Bank Of America Charitable Foundation Inc

Charlotte, NC

PURPOSE: OPERATIONAL SUPPORT

$60
View Grant Recipient Profile

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