Pediatric Epilepsy Research Foundation
The Pediatric Epilepsy Research Foundation (PERF®) is a private foundation based in Dallas, Texas. Established in 2004, it supports research in pediatric epilepsy and other pediatric neurologic conditions, including collaborative research and mentorship intended to advance clinical and health-services research in the United States and Canada.
Key facts about Pediatric Epilepsy Research Foundation
In short: Pediatric Epilepsy Research Foundation gave $929K across 29 grants in 2024 (avg $32K), top state Florida. 33% of 2024 grantees were new. Source: 2024 IRS Form 990-PF.
- EIN
- 20-1779737
- Latest 990 filing
- Form 990-PF, 2024
- Annual giving (2024)
- $929,487
- Grants made (2024)
- 29
- Average grant
- $32,051
- Median grant
- $10,000
- New grantees (estimate)
- 33% first-time grantees (7 of 21, 2024; small sample)
- Total assets
- $35,151,181
- Primary geography
- Florida (22% of itemized 2024 grant dollars)
- How to apply
- The foundation’s 2024 filing says applicants should contact the foundation to obtain application forms and a list of required materials. Full details ↓
- Deadline
- The 2027 infrastructure/registry grant cycle has an LOI deadline of October 29, 2026.
Data from IRS Form 990-PF, 2024; updated October 2026. New grantees are estimated by matching recipient names across years (methodology). Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$35.2M
+6.7% YoY
Annual Giving
$929K
+22.2% YoY
Grant Count
29
+70.6% YoY
Avg Grant Size
$32K
-28.4% YoY
Under IRS private-foundation payout rules, Pediatric Epilepsy Research Foundation reported a distributable amount of $1.8M for 2024 — the minimum it must pay out in qualifying distributions.
Is Pediatric Epilepsy Research Foundation open to new grantees?
33%
first-time grantees, 2024
In 2024, 7 of 21 grantees (33%) were first-time recipients. With only 21 grantees, that is a small sample: one grantee more or less moves the share by about 5 points. First grants averaged $72K; repeat grants $30K. How we count
Medians: $50K first-time, $15K repeat.
- 43% of 2024 grantees were also funded in 2023. Method
- Giving held roughly steady from 2021 to 2024 (−16%). Method
- In 2024 it paid out 52% of its IRS minimum distribution (the 5% rule). Foundations have until the end of the next year to meet it. Method
Estimate from itemized grant lists in IRS Form 990-PF filings (2020–2024). Recipient names are matched across years, so a renamed or misspelled grantee can look new; grants to individuals are left out. Methodology.
Mission & Focus Areas
PERF® was established to support research in pediatric epilepsy and other pediatric neurologic conditions. Its website describes its support for multicenter collaboration and mentorship, and its current grant information includes infrastructure and registry research in any area of pediatric neurology, with a special interest in pediatric epilepsy.
Recipients include hospitals, universities, and professional societies. The grantees describe their own work in varied terms: Children’s Mercy describes its mission as children’s care, translational research, innovation, and caregiver education; the Child Neurology Society describes its mission as promoting optimal care for children with neurological and developmental disorders through education, advocacy, and support for clinicians and researchers; and the American Epilepsy Society describes its mission as promoting research and education for professionals dedicated to epilepsy prevention, treatment, and cure.
Grantmaking
In filing year 2024, PERF® reported 29 grants totaling $929,487. Individual awards ranged from $75 to $200,000, with a median grant of $10,000. The largest listed awards included $200,000 to the University of Miami for a scholarship fund; $90,000 each to UCLA, Brigham and Women’s Hospital, and Children’s Mercy Hospital for research; and $50,000 each to the University of Colorado, the Canadian League Against Epilepsy, and the Child Neurology Society for research.
PERF®’s website describes an infrastructure/registry research grant for developing new multicenter infrastructure or expanding the scientific scope of existing infrastructure. New registries or networks must involve at least three academic institutions actively enrolling participants. The website says invited applications must include a mentoring plan and that the foundation prefers projects offering training or mentorship opportunities. Its career-development guidance describes PERF®-Child Neurology Society Elterman and Shields grants of $150,000 over two years for eligible early-stage investigators. A separate PERF®-Child Neurology Society Bridge Grant provides $50,000 and requires a 1:1 match from the awardee’s division or department.
Review Cycle
The 2027 infrastructure/registry grant cycle has an LOI deadline of October 29, 2026. The 2024 filing states that there are no deadlines.
Invitation Only
The foundation’s 2024 filing says applicants should contact the foundation to obtain application forms and a list of required materials. The website invites letters of intent for grant consideration; full applications for the infrastructure/registry grant are by invitation only. The filing says the foundation does not restrict giving to preselected organizations and that awards are restricted to research in pediatric epilepsy and neurology.
Open Grants
5 open opportunities from Pediatric Epilepsy Research Foundation
PERF: Career Development Grants - CNS Elterman Research Grant
Pediatric Epilepsy Research Foundation
Amount
US $150,000
Deadline
Deadline not published
PERF: Career Development Grants - CNS Shields Research Grant
Pediatric Epilepsy Research Foundation
Amount
US $150,000
Deadline
Deadline not published
PERF: CNS Bridge Grant Program
Pediatric Epilepsy Research Foundation
Amount
Up to US $100,000
Deadline
Deadline not published
Ready to take the next step with Pediatric Epilepsy Research Foundation?
Geographic Focus
Where this funder awards grants
PERF® describes its support for collaborative research in Canada and the United States. Its 2024 grants went to recipients in multiple U.S. states and to the Canadian League Against Epilepsy.
Grant Distribution by State
Share of 2024 grant dollars across all 29 itemized grants.
States
Cities
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2024, annual grant giving ranged from $630K (2020) to $2.0M (2022). In 2024 it made 29 grants totaling $929K.
Grant Insights
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2024
The largest 2024 recipient was University of Miami ($200K). Together the top 10 received $805K.
Grant Size Distribution
122 grants across all recorded years
The most common grant size was under $50K: 84 grants of 122 (69%).
Giving History
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of Miami Coral Gables, FL | Scholarship Fund | $200,000 |
| UCLA Los Angeles, CA | Research | $90,000 |
| Brigham and Women's Hospital Boston, MA | Research | $90,000 |
| Children's Mercy Hospital Kansas City, MO | Research | $90,000 |
| University of Colorado Denver, CO | Research | $50,000 |
| Canadian League Against Epilepsy | Research | $50,000 |
| Child Neurology Society Roseville, MN | Research | $50,000 |
| Child Neurology Society Roseville, MN | Research | $50,000 |
| American Epilepsy Society Chicago, IL | Research | $25,000 |
| Weill Cornell Medicine New York, NY | Research | $25,000 |
Financial History
Multi-year comparison from IRS filings
| Filing year | Assets | Revenue | Expenses | Grants |
|---|---|---|---|---|
| 2024 | $35,151,181 | $2,721,526 | $1,374,345 | $929,487 |
| 2023 | $32,948,389 | $3,086,671 | $1,217,622 | $760,693 |
| 2022 | $28,110,168 | $4,718,750 | $2,376,817 | $2,046,969 |
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $35,151,181 | $32,948,389 | $28,110,168 |
| Revenue | $2,721,526 | $3,086,671 | $4,718,750 |
| Expenses | $1,374,345 | $1,217,622 | $2,376,817 |
| Qualifying Distributions | $929,487 | $760,693 | $2,046,969 |
| Net Investment Income | $2,713,933 | $3,086,627 | $4,712,598 |
| Distributable Amount | $1,802,982 | $1,632,587 | $1,528,654 |
Data update history
When this profile's IRS filing data changed on Grantable
- IRS filings on file for fiscal years 2020–2024
Leadership & Key People
Leadership team and compensation from IRS filings
The 2024 filing lists Renee Shellhaas as president; Roy D. Elterman, MD, as treasurer; W. Donald Shields, MD, as vice president; Stephen Ashwal, MD, E. Martina Bebin, MD, Peter Camfield, MD, Deborah Hirtz, MD, and Sookyong Koh, MD, as directors; and Herbert Winokur and John Murray as emeritus.
Pediatric Epilepsy Research Foundation is led by Renee Shellhaas, President since 2024 (on filings since 2021); 1 of 14 officers listed in 2024 is compensated.
Officers on the 2024 filing
Renee Shellhaas
President
Director → President-El, 2022
President-El → President, 2024
On filings since 2021
40 hrs/week
$25K (2022) → $87K (2024)
Deborah Hirtz MD
Director
On filings since 2020
No compensation reported
E. Martina Bebin MD
Director
On filings since 2020
No compensation reported
Peter Camfield MD
Director
On filings since 2020
No compensation reported
Sookyong Koh MD
Director
On filings since 2020
No compensation reported
Stephen Ashwal MD
Director
On filings since 2020
No compensation reported
Dennis Dlugos
Director
On filings since 2022
No compensation reported
Lori Jordan
Director
On filings since 2022
No compensation reported
Niko Kaciroti
Director
On filings since 2022
No compensation reported
Teri Behnke
Director
On filings since 2022
No compensation reported
Herbert Winokur
Emeritus
On filings since 2020
No compensation reported
John Murray
Emeritus
Director → Emeritus, 2022
On filings since 2020
No compensation reported
Roy D. Elterman MD
Treasurer
President → Treasurer, 2024
On filings since 2020
3 hrs/week
No compensation reported
W. Donald Shields MD
Vice President
On filings since 2020
No compensation reported
Former officers (2)
- Former: Eric Weatherford (2020–2021) — Director
- Former: Michael V. Johnston MD (2020–2021) — Director
Data from IRS Form 990 filings, 2020–2024. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2024 IRS filing
The highest reported compensation on the 2024 filing was $87K, to Renee Shellhaas (President).
Contact
Application contact: Pediatric Epilepsyneurology Resear
Mailing address: 8390 Lyndon B Johnson Fwy Ste 350, Dallas, TX 75243
Phone: (469) 498-1658
Website: https://pediatricepilepsyresearchfoundation.org
Frequently asked questions about Pediatric Epilepsy Research Foundation
How much does Pediatric Epilepsy Research Foundation give each year?
Pediatric Epilepsy Research Foundation gave $929K across 29 grants in 2024, according to its 2024 IRS Form 990-PF. In 2023 it gave $761K across 17 grants.
What is Pediatric Epilepsy Research Foundation's typical grant size?
Pediatric Epilepsy Research Foundation's median grant in 2024 was $10,000, and its average grant was $32,051, across 29 grants on its 2024 IRS Form 990-PF. Organizations receiving their first grant from Pediatric Epilepsy Research Foundation that year got $72K on average.
Where does Pediatric Epilepsy Research Foundation give grants?
Pediatric Epilepsy Research Foundation's top state is Florida, with 22% of the grant dollars itemized on its 2024 IRS Form 990-PF. The next largest states were Minnesota (16%) and California (10%). The most frequent recipient cities were Roseville, MN (3 grants), Dallas, TX (3 grants), Chicago, IL (2 grants) and St. Paul, MN (2 grants).
Does Pediatric Epilepsy Research Foundation give general operating support?
Not in 2024: none of the 29 grants with a stated purpose on Pediatric Epilepsy Research Foundation's 2024 IRS Form 990-PF were described as general or operating support. Recurring purposes include "Research" (27 grants).
Who are Pediatric Epilepsy Research Foundation's largest grantees?
Pediatric Epilepsy Research Foundation's largest 2024 grantees include University of Miami ($200,000), Child Neurology Society ($145,000 across 5 grants) and UCLA ($90,000), according to its 2024 IRS Form 990-PF. Together they received 47% of its itemized 2024 grant dollars.
How large is Pediatric Epilepsy Research Foundation?
Pediatric Epilepsy Research Foundation reported $35.2M in total assets on its 2024 IRS Form 990-PF. It paid out $929K in qualifying distributions that year, against a required minimum of $1.8M (roughly 5% of its investment assets). Falling short in one year is not a violation: foundations have until the end of the next year to meet the minimum.
What does Pediatric Epilepsy Research Foundation fund?
PERF® was established to support research in pediatric epilepsy and other pediatric neurologic conditions. See mission & focus areas ↑
How do I apply for a grant from Pediatric Epilepsy Research Foundation?
The foundation’s 2024 filing says applicants should contact the foundation to obtain application forms and a list of required materials. Eligibility and process details are in the grantmaking section of this profile. See how to apply ↑
What is Pediatric Epilepsy Research Foundation's EIN?
Pediatric Epilepsy Research Foundation's EIN (Employer Identification Number) is 20-1779737. IRS Form 990 filing data is available on this page for 2020–2024.
Data last updated October 2026. Sourced from IRS Form 990-PF filings. Research dossier generated October 2026.
Here's the math on researching Pediatric Epilepsy Research Foundation by hand.
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