International Foundation for Cdkl5 Research
Donations deductibleInternational Foundation for Cdkl5 Research's network
8 people1 organisationi8 people and 1 organisation on this map.The large node is the subject of this page. Solid lines are what the register itself records (8). Violet dotted lines (1) are likely: the same full name sits on the current board of another organisation in the same register and region. Form 990 filings give names without a person identifier; SEC insider filings carry a CIK. It may be a different person.The board
8 listediTime on the board is observed from the annual filings: the IRS files no appointment date, so the bar counts years from the first filing the person appears on - a lower bound, not a filed start date. Names are exactly as filed. The IRS publishes no person identifier, so this edition does not yet link a person across organisations in the tables. The network map shows same-name matches as likely links only, never as confirmed.Tenure and departures are observed across annual filings. Observed tenure is a lower bound - a member may have joined before the first year on record. The organisation reported 8 voting members of its governing body on its latest Form 990 Part VI, which matches the board listed here.| Name | Role as filed | Since | On the board |
|---|---|---|---|
| Amanda Jaksha | Treasurer | 2018 | 8 yrs |
| Garrett Decker | Director | 2018 | 8 yrs |
| Karen Utley | President | 2018 | 8 yrs |
| Marissa Bishop | Director | 2019 | 7 yrs |
| Melissa Ralston | Board Member Emeritus | 2018 | 8 yrs |
| Miriam Blase | Director | 2018 | 8 yrs |
| Paul Miller | Company secretary | 2018 | 8 yrs |
| Rick Upp | Vice President | 2018 | 8 yrs |
Under 5 years5 to 6 years6 years or more
Pay and hours
year to 31 December 2024iFrom Part VII of the Form 990: compensation reported for each officer, director, trustee, key employee and highest-paid staff member, and the average hours a week they report. Most board members are unpaid; a blank means nothing was reported. Pay from related organisations is shown separately.| Name | Title as filed | Hours a week | Pay from the organisation | Related organisations | Other |
|---|---|---|---|---|---|
| Karen Utley | President | 35 | $0 | ||
| Rick Upp | Vice President | 15 | $0 | ||
| Paul Miller | Secretary | 15 | $0 | ||
| Amanda Jaksha | Treasurer | 15 | $0 | ||
| Miriam Churgin | Director | 1 | $0 | ||
| Garrett Decker | Director | 1 | $0 | ||
| Marissa Bishop | Director | 1 | $0 | ||
| Melissa Ralston | Board Member Emeritus | 1 | $0 |
No pay was reported for anyone in Part VII on this return.
Colorado roster
10 listediOfficers, directors and trustees from the latest filing with the Colorado Secretary of State (document 20253034156). Titles are as filed; some entries are registered agents or custodians of records rather than board members. Source: data.colorado.gov, public domain.| Name | Title as filed |
|---|---|
| Brian Pfister | Director |
| Paul Miller | Secretary, Director |
| Karen Utley | President |
| Miriam Churgin | Director |
| Shilpi Khera | Treasurer |
| Karen Utley | President, Director |
| Rick Upp | Vice President, Director |
| Crystal Weber | Director |
| Karen Utley | |
| Garrett Decker | Director |
About
- Legal name
- International Foundation for CDKL5 Research
- EIN
- 270950477
- Address
- Po Box 926, Wadsworth, OH, 44282-0926
- State
- Ohio
- 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. (as filed on the Form 990)
- Activity (NTEE)
- T30 Philanthropy, voluntary services and grantmaking
- IRS classification
- 501(c)03 (tax-exempt under section 501(c)(3) where shown)
- Classified purpose
- Philanthropy, Voluntarism & Grantmaking Foundations
- Size band
- 5 (IRS master file code)
- Formed
- 2009
- Principal officer
- Karen Utley (as named on the Form 990)
- IRS ruling date
- 1 May 2010
- Status
- Code 01 (unconditional exemption)
- Form 990 filings on record
- 5, latest 2023
- IRS Publication 78
- PC (contributions deductible)
Most connected
Longest observed on the filings
≥8years on the filingsAmanda Jaksha
≥8years on the filingsGarrett Decker
≥8years on the filingsKaren Utley
≥8years on the filingsMelissa Ralston
Latest return
year to 31 December 2024iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2024. US dollars, as filed.- Total assets
- $977k
- Total liabilities
- $13k
- Net assets or fund balances
- $964k
- Contributions and grants received
- $713k
- Program service revenue
- $0
- Grants and similar paid out
- $121k
- Employees
- 0
- Volunteers
- 12
Grants paid
4 listediFrom Schedule I of the Form 990: grants and assistance to organisations in the United States, largest first (up to 25). Schedule I is filed only by organisations that gave more than $5,000 to any one recipient.| Recipient | Purpose | Amount |
|---|---|---|
| University of Oregon | $56k | |
| Children's Hospital Philadelphia | $50k | |
| Washington University School of Medicine | $30k | |
| Orphan Disease Center at University of Pennsylvania | $13k |