Program areas at Cystinoisis 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 biellial 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 Cystinoisis Research Network
Who funds Cystinoisis Research Network
Grants from foundations and other nonprofits
Personnel at Cystinoisis 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 |
| Kristina Sevel | Vice President Research / Director | $0 | 2023-12-31 |
| Christy Greeley | Executive Director and Vice President Research / Executive Director and Vice President , Research / Executive Director and Vice President of Research | $0 | 2023-12-31 |
| Clair Johnstone | Executive Director | | 2023-11-15 |
Financials for Cystinoisis Research Network
| Revenues | FYE 12/2023 | FYE 12/2022 | % Change |
|---|
| Total grants, contributions, etc. | $508,084 | $345,873 | 46.9% |
| Program services | $0 | $0 | - |
| Investment income and dividends | $2,967 | $394 | 653% |
| 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 | $511,051 | $346,267 | 47.6% |
Organizations like Cystinoisis Research Network
| Organization | Type | Location | Revenue |
|---|
| MyChild'sCancer | 501(c)(3) | Fair Lawn, NJ | $454,068 |
| American Association of Bovine Practitioners Foundation | 501(c)(3) | Ashland, OH | $466,561 |
| The Origins Project Foundation | 501(c)(3) | Phoenix, AZ | $426,197 |
| The Gregg Pearson Foundation | 501(c)(3) | Grapevine, TX | $665,210 |
| A Better Day Therapy Learning Center | 501(c)(3) | Doral, FL | $255,908 |
| Corvita Science Foundation NFP | 501(c)(3) | Chicago, IL | $383,931 |
| Aats Foundation | 501(c)(3) | Beverly, MA | $2,187,997 |
| Apsc Foundation for Education and Research | 501(c)(3) | Frankfort, KY | $159,431 |
| Congenital Adrenal Hyperplasia Research Education and Support Foundation | 501(c)(3) | Union, NJ | $954,248 |
| Copper Beech Institute | 501(c)(3) | West Hartford, CT | $574,512 |
Data update history
February 9, 2025
Posted financials
Added Form 990 for fiscal year 2023
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
Nonprofit Types
Grantmaking organizationsDisease research fundraisersSchoolsCharities
Issues
Education
Characteristics
Conducts 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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