CureDuchenne

Our vision is our name: To Cure Duchenne

Newport Beach, CA   |  www.cureduchenne.org

Mission

CureDuchenne is committed to improving the lives of everyone affected by Duchenne muscular dystrophy (DMD) through accelerating research to find the cure, improving care and empowering the Duchenne community. From creating the first Duchenne-specific physical therapy education program and enabling human clinical trials for the first-ever FDA approved drug for these patients, to launching a supplemental newborn screening initiative, we believe in tackling Duchenne from every angle. Duchenne is a 100% fatal genetic disease and the most common form of muscular dystrophy, which affects mostly boys. There are over 300,000 patients worldwide and 15,000 in the US.

Ruling year info

2004

Founder & CEO

Mrs. Debra Miller

Main address

100 Bayview Circle Suite 5600

Newport Beach, CA 92660 USA

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EIN

20-0299958

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

Fund Raising and/or Fund Distribution (H12)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

CureDuchenne Research

CureDuchenne is the leading non-profit funding organization for Duchenne research. Our focus on high-impact research has accelerated progress toward new therapeutic approaches as well as capitalized on existing technology, like CRISPR-CAS9 gene-editing that has changed the research landscape. Today CureDuchenne has a global reach and funds multiple Duchenne and platform technology projects each year. Like our early support of research in dystrophin-restoration, we are again taking a major step toward a future cure. We are building the world’s first Duchenne and Becker muscular dystrophy biobank, to give researchers a 360-degree view of life with DMD. CureDuchenne Link uses custom technology and builds on our nation-wide community network. It is hosted in one all-encompassing platform using industry-standard terminology compatible with other data sets. These securely coded bio-samples and survey data are then made accessible to qualified researchers.

Population(s) Served
People with disabilities
Children and youth

CureDuchenne understands the needs of the patient community. Our healthcare experts, in-house and collaborators, are current on all treatment options, from physical therapy to therapeutics and clinical trials. These experts counsel and educate Duchenne patients and families on best care options and bring the Duchenne medical community together to improve standard of care. Our interactive education and outreach programs provide information, resources, and best practices for managing the challenges of Duchenne to help improve overall quality of life for families across the country. From advocacy for neonatal screening to provision of a directory of neurologists with Duchenne expertise, to a Physical Therapist certification program, our aim is to ensure expert care for families. Our work has expanded globally with Duchenne care providers and families across North and South America, Africa, Europe, Asia, and Australia, requesting our expertise and services.

Population(s) Served
People with disabilities
Children and youth

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of public events held to further mission

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

We are committed to improving the lives of everyone affected by Duchenne through accelerating research to find the cure, improving care and empowering the Duchenne community.

From the start CureDuchenne went directly to the scientific experts in the field of Duchenne to help guide our funding of potential therapies to treat and ultimately cure Duchenne. CureDuchenne’s Scientific Advisory Board consists of the leading scientists in the world helping us determine the most viable research projects, accelerate the clinical trial process and bring potential life-saving drugs to help this generation of Duchenne boys. Our scientific board in partnership with our in-house Chief Scientific Officer work to identify new cutting edge research with the ability to quickly progress to human clinical trials.

We recently created an initiative called CureDuchenne Ventures. CureDuchenne Ventures funding strategy includes identifying drug targets and programs that exhibit the potential to advance rapidly to proof of concept studies. The goal of CureDuchenne Ventures is to provide substantial funding to several research projects over the next five years that will serve as a catalyst to drive significant investment from biotech and pharmaceutical companies and venture philanthropists. CureDuchenne has adopted a broad research strategy to identify and fund novel therapies that target specific components of the disease. We expect that as these projects progress to clinical settings, they will dramatically improve the prognosis for children diagnosed with Duchenne. Each project will allow CureDuchenne to receive a return based on success which will be reinvested in future projects creating a self-sustaining research budget.

CureDuchenne has a history of success and has funded seven research projects that have advanced into human clinical trials. Two of our funded projects are now in late-stage Phase II and Phase III clinical trials around the world and could become the first drugs to be approved for the treatment of Duchenne.

We are waiting for the first FDA approval of a Duchenne muscular dystrophy drug, and although close there are no approved drugs today.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Families across the United States and overseas who have a diagnosed child or children with Duchenne Muscular Dystrophy. We provide education and support for these families who experience extensive challenges with the lifelong disability and eventual premature death of these children.

  • How is your organization collecting feedback from the people you serve?

    Focus groups or interviews (by phone or in person), Community meetings/Town halls,

  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    1) In the evaluations of our national CD FUTURES conference in 2019, one of the feedback comments was: "I would liked to have seen additional wheelchair vendors as well as adaptable equipment vendors." We now have several vendors of at our FUTURES conferences, and have even hosted a Durable Equipment Expo with multiple vendors. 2) At a recent DuchenneXchange group meeting, we asked where could we improve the DuchenneXchange so it a more interactive experience: For families, use of a social media platform like Facebook was preferred over DuchenneXchange because so many are already utilizing it. We are now hosting Coffee Talks (mornings) and Cocktail Talks (evenings) on FB Live to provide purely social interaction between parents, family, staff and others.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders,

  • How has asking for feedback from the people you serve changed your relationship?

    We have always shared the feedback and evaluations with our Sponsors and parents/families so that we can continually improve our educational programs, workshops and conferences.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

CureDuchenne
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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CureDuchenne

Board of directors
as of 11/03/2022
SOURCE: Self-reported by organization
Board chair

N/A N/A

Debra Miller

CureDuchenne

Paul Miller

Go Fit Foods

Ryan Williams

Athletes First

Elaine Wu

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TJ Farnsworth

SightLine Health, LLC

Sarah McElroy

South Coast Repertory Theater

Jeffrey Goffman

Integrated Oncology Network, LLC

Martin Lehr

Context Therapeutics

David Maclnnis

Advent Children’s Hospital Orlando

Peter Strelow

PIMCO

Tim Sullivan

ActivePDF, Inc.

Dana White

Hyundai Motor North America

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 2/24/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 02/24/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.