Program areas at Cystinosis Research Network
The organization establishes and funds fellowships and Research grants focusing on clinical and Research training in Cystinosis.
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.
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.
Grants made by Cystinosis Research Network
Who funds Cystinosis Research Network
Grants from foundations and other nonprofits
Personnel at Cystinosis Research Network
| Name | Title | Compensation | Date of data |
|---|
| Johnathan Dicks | President , Vice President Development / Vice President , Development | $0 | 2022-12-31 |
| Marybeth Krummenacker | Vice President Education and Awareness / Vice President , Education and Awareness / Director | $0 | 2022-12-31 |
| Christy Greeley | Executive Director and Vice President Research / Executive Director and Vice President , Research / Executive Director and Vice President of Research | $0 | 2022-12-31 |
| Kristina Sevel | Vice President Research / Director | $0 | 2022-12-31 |
| Clair Johnstone | Executive Director | | 2023-11-15 |
| ...and 9 more key personnel |
Financials for Cystinosis Research Network
| Revenues | FYE 12/2022 | FYE 12/2021 | % Change |
|---|
| Total grants, contributions, etc. | $345,873 | $542,497 | -36.2% |
| Program services | $0 | $0 | - |
| Investment income and dividends | $394 | $713 | -44.7% |
| Tax-exempt bond proceeds | $0 | $0 | - |
| Royalty revenue | $0 | $0 | - |
| Net rental income | $0 | $0 | - |
| Net gain from sale of non-inventory assets | $0 | $0 | - |
| Net income from fundraising events | $0 | $0 | - |
| Net income from gaming activities | $0 | $0 | - |
| Net income from sales of inventory | $0 | $0 | - |
| Miscellaneous revenues | $0 | $0 | - |
| Total revenues | $346,267 | $543,210 | -36.3% |
Organizations like Cystinosis Research Network
| Organization | Type | Location | Revenue |
|---|
| Marina Orth Foundation | 501(c)(3) | Washington, DC | $254,705 |
| Jcahpo Education and Research Foundation | 501(c)(3) | Saint Paul, MN | $97,423 |
| American Association of Bovine Practitioners Foundation | 501(c)(3) | Ashland, OH | $377,103 |
| American Hand Therapy Foundation | 501(c)(3) | Houston, TX | $152,626 |
| American Gelbvieh Foundation | 501(c)(3) | Lincoln, NE | $120,503 |
| The Gregg Pearson Foundation | 501(c)(3) | Grapevine, TX | $411,375 |
| Minnesota Veterinary Medical Foundation | 501(c)(3) | South St Paul, MN | $383,762 |
| Joseph James Morelli Legacy Foundation | 501(c)(3) | Park City, UT | $323,143 |
| The Origins Project Foundation | 501(c)(3) | Phoenix, AZ | $398,161 |
| National Athletic Trainers' Association Research and Education Foundation | 501(c)(3) | Carrollton, TX | $489,842 |
Data update history
December 28, 2023
Posted financials
Added Form 990 for fiscal year 2022
December 28, 2023
Updated personnel
Identified 4 new personnel
July 17, 2023
Posted financials
Added Form 990 for fiscal year 2021
July 8, 2023
Updated personnel
Identified 2 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersSchoolsCharities
Issues
Education
Characteristics
Provides grantsConducts researchOperates internationallyProvides scholarshipsTax deductible donationsNo full-time employeesAccepts online donations
General information
- Address
- PO Box 702
- Lake Forest, IL 60045
- Metro area
- Chicago-Naperville-Elgin, IL-IN-WI
- County
- Lake County, IL
- Website URL
- cystinosis.org/Â
- Phone
- (847) 735-0471
IRS details
- EIN
- 04-3323789
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 1996
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- B00: Education: General
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
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