Cure CMD

a cure is among us

Lakewood, CA   |  www.curecmd.org

Mission

Cure CMD's mission is to advance research toward treatments for the Congenital Muscular Dystrophies, and to improve the lives of those living with CMD through engagement and support of our community.

Ruling year info

2008

Executive Director

Rachel Alvarez

Main address

3217 East Carson Street #1014

Lakewood, CA 90712 USA

Show more contact info

EIN

26-2640975

NTEE code info

Birth Defects, Genetic Diseases Research (H20)

Research Institutes and/or Public Policy Analysis (T05)

Alliance/Advocacy Organizations (G01)

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

SOURCE: Self-reported by organization

Cure CMD's mission is to advance research for treatments and a cure for the Congenital Muscular Dystrophies. We will improve the lives of those living with CMD through engagement and support of our community.

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?

Research Grants

The organization's most significant commitment is to find and fund high potential research and clinical trials. Our mission is to bring research and treatments to the Congenital Muscular Dystrophies.

Population(s) Served
Families
People with diseases and illnesses

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

Find treatments and a cure for congenital muscular dystrophy.

We fund cutting edge research, scientific and family conferences, and educational initiatives to improve care.

Through a robust donor community and grants.

We have launched two clinical trials and a patient registry, and continue to fund cutting-edge research.

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?

    People affected by congenital muscular dystrophy

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

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Suggestion box/email,

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

    To identify and remedy poor client service experiences, 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 identify where we are less inclusive or equitable across demographic groups, 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?

    Helping the community better understand care standards and educating them in science and medical literacy to enable self advocacy.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our community partners,

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

    Over the past several years, we have shifted our decision-making process to be patient-focused and centered around the voice of the patient.

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

    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 demographics (e.g., race, age, gender, etc.), 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?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time, It is difficult to identify actionable feedback,

Financials

Cure CMD
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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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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

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

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Cure CMD

Board of directors
as of 8/12/2021
SOURCE: Self-reported by organization
Board chair

Patrick May

Colliers International

Term: 2008 -

Eunice Kim

Google

Robert Sunris

Bank of America

Jeff Rowbottom

Iron Park Capital

Sara Bloomfield

Brownmed

Oscar Mayer

Children's Hospital of Pennsylvania

Jodi Wolff

Santhera Pharmaceuticals

Carla Grosmann

University of San Diego

Rachel Alvarez

Cure CMD

John Day

Stanford University

Megan Meyer

University of Iowa

Mark Beare

Corel Corporation

Tim Knutson

Carthage College

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 ? No
  • 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 6/17/2021,

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, Not transgender (cisgender)
Sexual orientation
Decline to state
Disability status
Person with a disability

Race & ethnicity

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 06/02/2021

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

Data
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.