Organizations Filed Purposes:
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.
A number of fundraisers were held in 2019. In addition, contributions were received from numerous individuals, corporations, and foundations. As a result, grants totaling $516,710 were made during 2019 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.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Melissa Ralston | Board Member Emeritus | 1 | $0 |
| Marissa Bishop | Director | 1 | $0 |
| Garrett Decker | Director | 1 | $0 |
| Kristin Kozera | Director | 1 | $0 |
| Miriam Blase | Director | 1 | $0 |
| Amanda Jaksha | Treasurer | 15 | $0 |
| Paul Miller | Secretary | 15 | $0 |
| Rick Upp | Vice President | 15 | $0 |
| Karen Utley | President | 35 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202003179349302995_public.xml