International Foundation for Cdkl5 Research
International Foundation for Cdkl5 Research
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About this organization
Mission
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.
About
A number of fundraisers were held in 2018. In addition, contributions were received from numerous individuals, corporations, and foundations. As a result, grants totaling $558,849 were made during 2018 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.
Interesting data from their 2020 990 filing
The filing outlines the non-profit's goal as “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.”.
When explaining its purpose, the activities were outlined as: “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.”.
- As per legal reporting requirements, the state of operation for the non-profit is OH.
- The non-profit's address for 2020 is listed as 2228 Podtburg Cir, Johnstown, CO, 80534 in the filing.
- As per the non-profit's form, they have 0 employees as of 2020.
- Does not operate a hospital.
- Does not operate a school.
- Does not collect art.
- Does not provide credit counseling.
- Does not have foreign activities.
- Is not a donor-advised fund.
- Is not a private foundation.
- Expenses are between $250,000 and $500,000.
- Revenue is between $250,000 and $500,000.
- Revenue less expenses is -$317,643.
- The CEO's compensation policy within the organization is not established through a review and approval from a neutral party.
- The organization has 10 independent voting members.
- The organization was formed in 2009.
- The organization has a written policy that addresses conflicts of interest.
- The organization is required to file Schedule B.
- The organization is required to file Schedule O.
- The organization pays $0 in salary, compensation, and benefits to its employees.
- The organization pays $5,159 in fundraising expenses.
- The organization provides Form 990 to its governing body.
- The organization has minutes of its meetings.
- The organization has fundraising events.
- The organization has grants to organizations.
- The organization's financial statements were reviewed by an accountant.