Cystic Fibrosis Research Fund Inc
Cystic Fibrosis Research Fund Inc is a public charity based in Ardmore, Pennsylvania. Its filing identifies its purpose as accelerating research and drug development for people with cystic fibrosis who do not benefit from currently available mutation-targeted therapies; the organization’s grant materials identify it as Emily’s Entourage.
Cystic Fibrosis Research Fund Inc at a glance
In short: Cystic Fibrosis Research Fund Inc gave $1.3M across 10 grants in 2025 (avg $127K), top state California. 20% of 2025 grantees were new. Source: 2025 IRS Form 990.
- Annual giving (2025)
- $1,270,595
- +3.1% vs 2024
- Grants made (2025)
- 10
- +25.0% vs 2024
- Average grant
- $127,060
- -17.6% vs 2024
- Median grant
- $104,704
- Total assets
- $5,622,025
- -5.7% vs 2024
- New grantees (estimate)
- 20% first-time grantees (2 of 10, 2025; small sample)
- Primary geography
- California (28% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated October 2026. New grantees are estimated by matching recipient names across years (methodology).
How to apply to Cystic Fibrosis Research Fund Inc
- Review Cycle
- The 2026 Translational Grant application deadline is November 15, 2026, at 11:59 p.m. Pacific Time.
- Deadline
- The 2026 Translational Grant application deadline is November 15, 2026, at 11:59 p.m.
- Contact
Mailing address: 100 St Georges Road Ste G1, Ardmore, PA 19003
Phone: (215) 341-6720
Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Open Grants
3 open opportunities from Cystic Fibrosis Research Fund Inc
Collaborative Grants
Cystic Fibrosis Research Fund Inc
Amount
Varies
Deadline
Deadline not published
Translational Research Grants
Cystic Fibrosis Research Fund Inc
Amount
Varies
Deadline
Deadline not published
Venture Philanthropy Investments
Cystic Fibrosis Research Fund Inc
Amount
Varies
Deadline
Deadline not published
Who Cystic Fibrosis Research Fund Inc funds
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2025
The largest 2025 recipient was University of California San Diego ($248K). Together the top 10 received $1.3M.
Grant Size Distribution
35 grants across all recorded years
The most common grant size was in the $50–100K range: 17 grants of 35 (49%).
Geographic Focus
Where this funder awards grants
The 2025 filing lists grant recipients in California, Massachusetts, Pennsylvania, Iowa, Texas, New York, Ohio, and Michigan. California received 28% of grant dollars, Massachusetts 22%, Pennsylvania 14%, Iowa 13%, and Texas 8%. The organization’s grant materials describe its research funding as international and report awards in six countries.
Grant Distribution by State
Share of 2025 grant dollars across all 10 itemized grants.
States
Cities
Is Cystic Fibrosis Research Fund Inc open to new grantees?
20%
first-time grantees, 2025
In 2025, 2 of 10 grantees (20%) were first-time recipients. With only 10 grantees, that is a small sample: one grantee more or less moves the share by about 10 points. First grants averaged $165K; repeat grants $118K. How we count
Medians: $165K first-time, $92K repeat.
Estimate from itemized grant lists in IRS Form 990 filings (2020–2025). Recipient names are matched across years, so a renamed or misspelled grantee can look new; grants to individuals are left out. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $440K (2023) to $1.3M (2025). In 2025 it made 10 grants totaling $1.3M.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of California San Diego San Diego, CA | — | $247,500 |
| University of Massachusetts Amherst, MA | — | $220,000 |
| Childrens Hospital of Philadelphia Research Institute Philadelphia, PA | — | $183,138 |
| University of IA Iowa City, IA | — | $160,628 |
| San Diego State University San Diego, CA | — | $110,000 |
| The University of Texas at Austin Austin, TX | — | $99,407 |
| University of Rochester Rochester, NY | — | $84,922 |
| Trustees of Boston University Boston, MA | — | $55,000 |
| Case Western Reserve University Cleveland, OH | — | $55,000 |
| Regents of the University of Michigan Ann Arbor, MI | — | $55,000 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $5,622,025 | $3,033,288 | $2,762,609 | $1,270,595 | 10 | $207,704 |
| 2024 | $5,958,828 | $3,451,167 | $2,959,423 | $1,232,874 | 8 | $225,287 |
| 2023 | $5,004,389 | $2,799,957 | $2,119,809 | $440,000 | 5 | $162,753 |
| 2022 | $4,247,786 | $1,789,652 | $1,954,560 | $811,182 | 6 | $21,442 |
| 2021 | $4,381,158 | $2,091,732 | $943,930 | $510,175 | 6 | $28,868 |
| 2020 | $3,196,742 | $2,042,398 | $1,169,291 | $624,835 | 9 | $20,192 |
Research compiled by Grantable AI from public sources. Last updated October 2026.
Mission & Focus Areas
The organization’s stated mission is to accelerate research and drug development for the final 10% of the cystic fibrosis community who do not benefit from currently available mutation-targeted therapies. Its website describes a research focus on genetic-based approaches to correct CF mutations that do not respond to existing CFTR modulators, as well as anti-infectives for difficult-to-treat infections associated with CF.
Its grantmaking supports research institutions. Among the 2025 recipients, the University of Rochester describes its own mission as including higher education, research, and charitable patient care; Case Western Reserve University describes itself as a research-oriented university with strengths in health, engineering, arts and sciences, and other fields. These are the grantees’ descriptions of their missions.
Grantmaking
In filing year 2025, the organization gave 10 grants totaling $1,270,595. Awards ranged from $55,000 to $247,500, with a median of $104,704. The largest awards went to the University of California San Diego ($247,500), the University of Massachusetts ($220,000), Children’s Hospital of Philadelphia Research Institute ($183,138), and the University of Iowa ($160,628). Other listed recipients included San Diego State University ($110,000), the University of Texas at Austin ($99,407), and the University of Rochester ($84,922).
The organization describes several funding mechanisms, including translational grants, collaborative grants, and exploratory grants. Its website lists the 2026 Translational Grant cycle as open, with proposals focused on moving promising approaches toward clinical development; it also describes collaborative grants for teams of three or more investigators. Exploratory grants are considered outside formal cycles, with no formal application process or deadline stated for that mechanism.
Leadership & Key People
Leadership team and compensation from IRS filings
The 2025 filing lists Greg Reh, Jessica Rutstein Lazarus, Beth Shapiro Lavin, Julie Wertheimer, Coby Kramer Golinkoff, Danielle Selber, Doug Young, Nickie Boston, Emily Kramer Golinkoff, and Nick Dinges as directors.
Cystic Fibrosis Research Fund Inc is led by Michael Golinkoff, President on every filing since 2020; none of the 14 officers listed in 2025 report compensation.
Officers on the 2025 filing
Michael Golinkoff
President
On filings since 2020
10 hrs/week
No compensation reported
Beth Shapiro Lavin
Director
On filings since 2020
2 hrs/week
No compensation reported
Danielle Selber
Director
On filings since 2020
0.5 hrs/week
No compensation reported
Doug Young
Director
On filings since 2020
0.2 hrs/week
No compensation reported
Greg Reh
Director
On filings since 2020
0.5 hrs/week
No compensation reported
Jessica Rutstein Lazarus
Director
On filings since 2020
0.5 hrs/week
No compensation reported
Joan Denenberg
Director
On filings since 2020
2 hrs/week
No compensation reported
Julie Wertheimer
Director
On filings since 2020
0.2 hrs/week
No compensation reported
Nancy Astor Fox
Director
On filings since 2020
0.2 hrs/week
No compensation reported
Nick Dinges
Director
On filings since 2020
1 hr/week
No compensation reported
Nickie Boston
Director
On filings since 2020
1 hr/week
No compensation reported
Coby Kramer Golinkoff
Director
On filings since 2023
5 hrs/week
No compensation reported
Emily Kramer Golinkoff
Director
On filings since 2023
10 hrs/week
No compensation reported
Elizabeth P. Kramer
Secretary
On filings since 2020
20 hrs/week
No compensation reported
Former officers (6)
- Former: Emily K. Kramer-Golinkoff (2020–2022) — Director
- Former: Coby Kramer-Golinkoff (2021–2022) — Director
- Former: Jacob Kramer-Golinkoff (2020) — Director
- Former: Jessica Kurtz Erlbaum Retd (2020) — Director
- Former: Juliet Spitzer Retd (2020) — Director
- Former: Ted Bernstein (2020) — Director
Data from IRS Form 990 filings, 2020–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Frequently asked questions about Cystic Fibrosis Research Fund Inc
How much does Cystic Fibrosis Research Fund Inc give each year?
Cystic Fibrosis Research Fund Inc gave $1.3M across 10 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $1.2M across 8 grants.
What is Cystic Fibrosis Research Fund Inc's typical grant size?
Cystic Fibrosis Research Fund Inc's median grant in 2025 was $104,704, and its average grant was $127,060, across 10 grants on its 2025 IRS Form 990. Organizations receiving their first grant from Cystic Fibrosis Research Fund Inc that year got $165K on average.
Where does Cystic Fibrosis Research Fund Inc give grants?
Cystic Fibrosis Research Fund Inc's top state is California, with 28% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were Massachusetts (22%) and Pennsylvania (14%). The most frequent recipient cities were San Diego, CA (2 grants).
Who are Cystic Fibrosis Research Fund Inc's largest grantees?
Cystic Fibrosis Research Fund Inc's largest 2025 grantees include University of California San Diego ($247,500), University of Massachusetts ($220,000) and Childrens Hospital of Philadelphia Research Institute ($183,138), according to its 2025 IRS Form 990. Together they received 51% of its itemized 2025 grant dollars.
How large is Cystic Fibrosis Research Fund Inc?
Cystic Fibrosis Research Fund Inc reported $5.6M in total assets on its 2025 IRS Form 990. Its revenue that year was $3.0M.
What does Cystic Fibrosis Research Fund Inc fund?
The organization’s stated mission is to accelerate research and drug development for the final 10% of the cystic fibrosis community who do not benefit from currently available mutation-targeted therapies. See mission & focus areas ↑
How do I apply for a grant from Cystic Fibrosis Research Fund Inc?
Cystic Fibrosis Research Fund Inc has no public application process in the sources Grantable reviewed. Contact the foundation directly before submitting a request.
What is Cystic Fibrosis Research Fund Inc's EIN?
Cystic Fibrosis Research Fund Inc's EIN (Employer Identification Number) is 45-3768161. IRS Form 990 filing data is available on this page for 2020–2025.
Data last updated October 2026. Sourced from IRS Form 990 filings. Research dossier generated October 2026.
Data update history
(7)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS October 26, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS May 9, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS May 11, 2023)
- Updated Form 990 for fiscal year 2023 (received by the IRS May 13, 2024)
- Updated Form 990 for fiscal year 2024 (received by the IRS May 15, 2025)
- Added Form 990 for fiscal year 2025 (received by the IRS May 5, 2026)
- IRS filings on file for fiscal years 2020–2024
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Cite this profile
Grantable. (2026). Cystic Fibrosis Research Fund Inc funder profile. GrantGraph. Retrieved October 10, 2026, from https://grantable.co/funders/cystic-fibrosis-research-fund-inc-morg_d099a04385834aeba14db96b6e7c6f39
BibTeX
@misc{grantable_453768161_2026,
author = {{Grantable}},
title = {{Cystic Fibrosis Research Fund Inc funder profile}},
howpublished = {GrantGraph},
year = {2026},
url = {https://grantable.co/funders/cystic-fibrosis-research-fund-inc-morg_d099a04385834aeba14db96b6e7c6f39},
note = {Accessed 2026-10-10. Data licensed CC BY 4.0}
}The figures on this page are open data under CC BY 4.0: reuse them with credit to Grantable and a link. Download the data.
Figures come from Cystic Fibrosis Research Fund Inc's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
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