Cure Duchenne logo

Cure Duchenne

Foundation · Grantmaker Newport Beach, CA EIN: 20-0299958 Website

Cure duchenne is a non-profit organization dedicated to raising funds; coordinating and funding research necessary to find a cure for duchenne muscular dystrophy, increasing public awareness for duchenne muscular dystrophy patients, improving care, health,and quaility of living for duchenne muscular dystrophy patients.

Key facts about Cure Duchenne

In short: Cure Duchenne gave $660K across 4 grants in 2024 (avg $165K), top state Texas. Source: 2024 IRS Form 990 filing.

EIN
20-0299958
Latest 990 filing
Form 990 filing, 2024
Annual giving (2024)
$660,000
Grants made (2024)
4
Average grant
$165,000
Median grant
$150,000
Total assets
$30,906,923
Primary geography
Texas (45% of itemized 2024 grant dollars)

Data from IRS Form 990 filing, 2024; updated September 2026.

Financial Overview

From 2024 IRS Form 990 filing · View filing

Total Assets

$30.9M

+14.1% YoY

Annual Giving

$660K

+33.3% YoY

Grant Count

4

+33.3% YoY

Avg Grant Size

$165K

+0.0% YoY

How Cure Duchenne gives

  • Giving grew 67% from 2021 to 2024. Method

From the foundation's IRS Form 990 filings. Methodology.

About Cure Duchenne

Based on IRS filings

Cure Duchenne is a nonprofit organization focused on Medical Research, based in Newport Beach, CA. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $30.9M in total assets. In 2024, it awarded 4 grants totaling $660K.

Focus Areas

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Geographic Focus

Where this funder awards grants

Grant Distribution by State

5states

Share of all 4 itemized 2024 grant dollars.

Cities

BostonBethsedaDentonColumbiaGainsvilleShrewsbury

Giving Over Time

Total grant dollars and number of grants per year

$0$200K$400K$600K$800K0 grants20204 grants20212 grants20223 grants20234 grants2024

Grant Insights

How this funder distributes its grants

Top Recipients

Top 4 recipients in 2024

Neurology and Neuro Care Center: $300KNeurology and Neuro CareCenter$300KFoundation of National Institute of Health: $200KFoundation of NationalInstitute of Health$200KUniversity of Florida: $100KUniversity of Florida$100KThe Brigham and Women's Hospital Inc: $60KThe Brigham and Women'sHospital Inc$60K

Grant Size Distribution

13 grants across all recorded years

2<$50K2$50–100K7$100–250K2$250–500K$500K–1M$1–5M$5M+

Giving History

Grant recipients and amounts by year

RecipientPurposeAmount
NEUROLOGY AND NEURO CARE CENTER Denton, TXEDUCATION/ OUTREACH/ RESEARCHEDUCATION/ OUTREACH/ RESEARCH$300,000
FOUNDATION OF NATIONAL INSTITUTE OF HEALTH Bethseda, MDEDUCATION/ OUTREACH/ RESEARCH$200,000
UNIVERSITY OF FLORIDA Gainsville, FLEDUCATION/ OUTREACH/ RESEARCH$100,000
THE BRIGHAM AND WOMEN'S HOSPITAL INC Boston, MAEDUCATION/ OUTREACH/ RESEARCH$60,000

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Qualifying Distributions
Net Investment Income
$0$5M$10M$15M20202021202220232024
Metric202420232022
Total Assets$30,906,923$27,086,351$28,410,543
Revenue$3,941,885$7,357,938$5,751,368
Expenses$9,167,617$10,247,154$9,005,616
Qualifying Distributions———
Net Investment Income$-1,944,106$549,583$147,656
Distributable Amount———

Data update history

When this profile's IRS filing data changed on Grantable

  1. IRS filings on file for fiscal years 2020–2024

Leadership & Key People

Officers and directors from IRS filings

Cure Duchenne is led by Debra Miller, CEO since 2024 (on filings since 2020); 9 of 23 officers listed in 2024 are compensated.

Officers on the 2024 filing

  • Debra Miller

    CEO

    President → President & CEO, 2021

    President & CEO → CEO, 2024

    On filings since 2020

    40 hrs/week

    $151K (2020) → $151K (2024)

  • Laura Hameed

    Executive Director

    New on the 2024 filing

    40 hrs/week

    $243K (2024)

  • Kathlene Balisy

    Finance Director

    On filings since 2021

    40 hrs/week

    $154K (2021) → $190K (2024)

  • Heather Medlin

    Director of Clinical Development

    Senior Director of Clinical Development → Director of Clinical Development, 2023

    On filings since 2022

    40 hrs/week

    $157K (2022) → $199K (2024)

  • Andrea Pike

    Director of Marketing

    On filings since 2023

    40 hrs/week

    $175K (2023) → $174K (2024)

  • Emilie Perkins

    Director of Communications

    On filings since 2023

    40 hrs/week

    $166K (2023) → $170K (2024)

  • Monica Utley

    Director of Programs

    On filings since 2023

    40 hrs/week

    $170K (2023) → $169K (2024)

  • Dana White

    Director

    On filings since 2020

    1 hr/week

    No compensation reported

  • David Macinnis

    Director

    On filings since 2020

    1 hr/week

    No compensation reported

  • Jeffrey Goffman

    Director

    On filings since 2020

    1 hr/week

    No compensation reported

  • Martin Lehr

    Director

    On filings since 2020

    1 hr/week

    No compensation reported

  • Peter Strelow

    Director

    On filings since 2020

    1 hr/week

    No compensation reported

  • Ryan Williams

    Director

    On filings since 2020

    1 hr/week

    No compensation reported

  • Tim Sullivan

    Director

    On filings since 2020

    1 hr/week

    No compensation reported

  • Tj Farnsworth

    Director

    On filings since 2020

    1 hr/week

    No compensation reported

  • Bob Smith

    Director

    On filings since 2023

    1 hr/week

    No compensation reported

  • Christopher Finazzo

    Director

    On filings since 2023

    1 hr/week

    No compensation reported

  • Diane Kemple

    Director

    On filings since 2023

    1 hr/week

    No compensation reported

  • John Managonore

    Director

    New on the 2024 filing

    1 hr/week

    No compensation reported

  • Nicholas Prytherch

    Director

    New on the 2024 filing

    1 hr/week

    No compensation reported

  • Lianna Orlando

    Vice President of Research

    Senior Director of Research → Vice President of Research, 2022

    On filings since 2020

    40 hrs/week

    $175K (2020) → $214K (2024)

  • Michael Kelly

    Chief Scientific Officer

    On filings since 2022

    40 hrs/week

    $175K (2022) → $235K (2024)

  • Paul Miller

    Secretary

    On filings since 2020

    10 hrs/week

    No compensation reported

Former officers (8)
  • Former: Kent Mora (2022–2023) — Former Chief of Staff
  • Former: Ryan Meardon (2023) — Former Vice President of Donor Relations
  • Former: Elaine Wu (2020–2022) — Director
  • Former: Sarah McElroy (2020–2022) — Director
  • Former: Bradley Hodges (2022) — Former Partner With Cureduchenne Ventures
  • Former: Christian Nelson (2021) — Senior Director of Philanthropy
  • Former: Joann Kemp (2021) — Director of Clinical Programs
  • Former: Erin Frey (2020) — Senior Director of Advocacy

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

Laura Hameed — Executive Director: $243KLaura HameedExecutive Director$243KMichael Kelly — Chief Scientific Officer: $235KMichael KellyChief Scientific Officer$235KLianna Orlando — Vice President of Research: $214KLianna OrlandoVice President of Research$214KHeather Medlin — Director of Clinical Devel: $199KHeather MedlinDirector of Clinical Devel$199KKathlene Balisy — Finance Director: $190KKathlene BalisyFinance Director$190KAndrea Pike — Director of Marketing: $174KAndrea PikeDirector of Marketing$174KEmilie Perkins — Director of Communications: $170KEmilie PerkinsDirector of Communications$170KMonica Utley — Director of Programs: $169KMonica UtleyDirector of Programs$169KDebra Miller — CEO: $151KDebra MillerCEO$151K

Frequently asked questions about Cure Duchenne

How much does Cure Duchenne give each year?

Cure Duchenne gave $660K across 4 grants in 2024, according to its 2024 IRS Form 990 filing. In 2023 it gave $495K across 3 grants.

What is Cure Duchenne's typical grant size?

Cure Duchenne's median grant in 2024 was $150,000, and its average grant was $165,000, across 4 grants on its 2024 IRS Form 990 filing.

Where does Cure Duchenne give grants?

Cure Duchenne's top state is Texas, with 45% of the grant dollars itemized on its 2024 IRS Form 990 filing. The next largest states were Maryland (30%) and Florida (15%).

Does Cure Duchenne give general operating support?

Not in 2024: none of the 4 grants with a stated purpose on Cure Duchenne's 2024 IRS Form 990 filing were described as general or operating support. Recurring purposes include "Education/ Outreach/ Research" (3 grants).

How large is Cure Duchenne?

Cure Duchenne reported $30.9M in total assets on its 2024 IRS Form 990 filing. Its revenue that year was $3.9M.

What is Cure Duchenne?

Cure Duchenne is a nonprofit organization focused on Medical Research, based in Newport Beach, CA. It holds $30.9M in total assets as of 2024.

What is Cure Duchenne's EIN?

Cure Duchenne's EIN (Employer Identification Number) is 20-0299958. IRS Form 990 filing data is available on this page for 2020–2024.

Data last updated September 2026. Sourced from IRS Form 990 filings.

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