Cystic Fibrosis Research Fund
Donations deductibleCystic Fibrosis Research Fund's network
14 people2 organisationsi14 people and 2 organisations on this map.The large node is the subject of this page. Solid lines are what the register itself records (14). Violet dotted lines (2) 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
14 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 14 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 |
|---|---|---|---|
| Beth Shapiro Lavin | Director | 2018 | 8 yrs |
| Coby Kramer Golinkoff | Director | 2023 | 3 yrs |
| Danielle Selber | Director | 2018 | 8 yrs |
| Doug Young | Director | 2018 | 8 yrs |
| Elizabeth P Kramer (also filed as Elizabeth Kramer) | Company secretary | 2018 | 8 yrs |
| Emily Kramer Golinkoff | Director | 2023 | 3 yrs |
| Greg REH (also filed as Greg Reh) | Director | 2018 | 8 yrs |
| Jessica Rutstein Lazarus | Director | 2018 | 8 yrs |
| Joan Denenberg | Director | 2018 | 8 yrs |
| Julie Wertheimer | Director | 2018 | 8 yrs |
| Michael Golinkoff | President | 2018 | 8 yrs |
| Nancy Astor Fox (also filed as Nancy Astor Fox) | Director | 2018 | 8 yrs |
| Nick Dinges | Director | 2018 | 8 yrs |
| Nickie Boston | Director | 2018 | 8 yrs |
Pay and hours
year to 31 December 2025iFrom 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 |
|---|---|---|---|---|---|
| Greg Reh | Director | 0.5 | $0 | ||
| Jessica Rutstein Lazarus | Director | 0.5 | $0 | ||
| Beth Shapiro Lavin | Director | 2 | $0 | ||
| Julie Wertheimer | Director | 0.2 | $0 | ||
| Coby Kramer Golinkoff | Director | 5 | $0 | ||
| Danielle Selber | Director | 0.5 | $0 | ||
| Doug Young | Director | 0.2 | $0 | ||
| Nickie Boston | Director | 1 | $0 | ||
| Emily Kramer Golinkoff | Director | 10 | $0 | ||
| Nick Dinges | Director | 1 | $0 | ||
| Joan Denenberg | Director | 2 | $0 | ||
| Michael Golinkoff | President | 10 | $0 | ||
| Elizabeth Kramer | Secretary | 20 | $0 | ||
| Nancy Astor Fox | Director | 0.2 | $0 |
No pay was reported for anyone in Part VII on this return.
About
- Legal name
- Cystic Fibrosis Research Fund
- EIN
- 453768161
- Address
- 100 Saint Georges Rd Unit G1, Ardmore, PA, 19003-2531
- State
- Pennsylvania
- Mission
- The organization accelerates research and drug development for the final 10 of the cystic fibrosis community that do not benefit from the currently available mutation-targeted therapies. (as filed on the Form 990)
- Activity (NTEE)
- G20 Voluntary health associations and medical disciplines
- IRS classification
- 501(c)03 (tax-exempt under section 501(c)(3) where shown)
- Classified purpose
- Voluntary Health Associations & Medical Disciplines
- Size band
- 7 (IRS master file code)
- Formed
- 1987
- Principal officer
- Michael Golinkoff (as named on the Form 990)
- IRS ruling date
- 1 July 2012
- Status
- Code 01 (unconditional exemption)
- Form 990 filings on record
- 6, latest 2023
- IRS Publication 78
- PC (contributions deductible)
Most connected
Longest observed on the filings
≥8years on the filingsBeth Shapiro Lavin
≥8years on the filingsDanielle Selber
≥8years on the filingsDoug Young
≥8years on the filingsElizabeth P Kramer
Latest return
year to 31 December 2025iFigures from the newest Form 990 or 990-EZ in the IRS e-file releases of 2025 and 2026, for the year ending 31 December 2025. US dollars, as filed.- Total assets
- $5.6m
- Total liabilities
- $25k
- Net assets or fund balances
- $5.6m
- Contributions and grants received
- $3m
- Program service revenue
- $0
- Grants and similar paid out
- $1.3m
- Employees
- 11
Grants paid
10 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 California San Diego | $248k | |
| University of Massachusetts | $220k | |
| Childrens Hospital of Philadelphia Research Institute | $183k | |
| University of IA | $161k | |
| San Diego State University | $110k | |
| The University of Texas at Austin | $99k | |
| University of Rochester | $85k | |
| Trustees of Boston University | $55k | |
| Case Western Reserve University | $55k | |
| Regents of the University of Michigan | $55k |
State registration
1 entityiBusiness-entity registers published by US states. These records are matched to this organisation by name and state, not by EIN, and are labelled as likely matches. Street addresses are not shown.Cystic Fibrosis Research Fund, Inc. likely matchiMatched by exact name and state (and ZIP where shown). State registers do not publish EINs, so this is not a confirmed match. Source: Pennsylvania Department of State, business entities (data.pa.gov xvd7-5r2c). Licence: public domain. Data last fetched 18 October 2026.
- State
- Pennsylvania
- Entity type
- Domestic Nonprofit Corporation
- Status
- Active
- Formed
- 16 November 1987
- Registered agent
- Not stated
Officers (4)
- Emily Kramer-Golinkoff Co-Founder
- Liza Kramer Co-Founder
- Michael Golinkoff Governor
- Michael Golinkoff Co-Founder
City and state of officers are not held in this extract.