Cure JM Foundation

Because a cure can't wait.

aka Cure JM   |   Leesburg, VA   |  http://www.curejm.org/

Mission

Cure JM's mission is to find a cure and better treatments for Juvenile Myositis and improve the lives of families affected by JM.

Ruling year info

2004

Executive Director

Mr. James Minow

Main address

19309 Winmeade Drive Suite 204

Leesburg, VA 20176 USA

Show more contact info

EIN

35-2222262

NTEE code info

Fund Raising and/or Fund Distribution (G12)

Fund Raising and/or Fund Distribution (H12)

Specifically Named Diseases (G80)

IRS filing requirement

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

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Communication

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?

Cure JM Program of Excellence

Cure JM directly supports a Program of Excellence in JM research at the Children's Hospital of Chicago Research Center with annual grant funding of $350,000. This facility provides the highest quality of care to children afflicted with JM and the team's research findings have helped us progress towards the cure.

Population(s) Served
Children and youth
Young adults

Cure JM directly supports the JM research and assessment center at George Washington University in Washinton, D.C. The center provides consultative patient care and research activities that are international in scope. Consultations require intensive evaluation and multiple specialists' input in order to improve each patient's quality of life, diagnosis and therapeutic approaches.

Population(s) Served
Children and youth
Young adults

Cure JM has supported over 120 research grants, and continues to fund research to find better treatments and ultimately a cure for JM.

Population(s) Served
Children and youth

Cure JM provides a wealth of resources to families affected by JM, including a Family Support Network with regional support representatives. Cure JM sends out free Welcome Kits, brochures, information cards, and bracelets with each new patient registration. Cure JM also holds annual conferences for patients and their families.

Population(s) Served
Children and youth
Young adults

Where we work

Awards

2022 Top Rated 2022

Great NonProfits

Affiliations & memberships

Great Non Profits nonprofit 2022

Our results

SOURCE: Self-reported by organization

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

Total revenue earned to support advocacy efforts

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth, Young adults, Caregivers

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Cure JM Foundation® is a 501(c)(3) nonprofit organization. Our mission is to find a cure and better treatments for Juvenile Myositis and improve the lives of families affected by JM.

Number of families served

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Family Conferences & Family Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Cure JM serves 3,300+ families in 40 countries with a Family Support Network and global Physician Network. Cure JM provides no-cost educational and support materials and peer-support to all families.

Number of research studies supported

This metric is no longer tracked.
Totals By Year
Related Program

Research Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Cure JM is a global leader in Juvenile Myositis research to find a cure and better treatments for Juvenile Myositis.

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.

Our Mission: To find a cure and better treatments for Juvenile Myositis and improve the lives of families affected by JM.

Cure JM will proactively seek to fund and help create cutting-edge basic and translational research to rapidly advance improved treatments and a cure for juvenile myositis.

Cure JM seeks to improve the lives of families affected by Juvenile Myositis.
Immediate Goals:
-Expand the Cure JM Clinical Care Network and fund the work of more children's hospitals acrossthe U.S. to achieve continuous improvement in quality of care.
-Further strengthen Cure JM's partnership with the National Institutes of Health to accelerateclinical trials already underway to validate newer and better drugs to treat JM.
-Increase laboratory research funding to expand our knowledge of the underlying causes of JM,which, when further understood, will lead to more individualized patient-centered treatments.
-Reactivate Cure JM's national chapter leadership structure
to support families and children and young adults as the threat of COVID-19 recedes and parts of the country safely reopen.
-Bring 100 new family leaders onboard who bring the vision and passion to
drive our mission and reach higher levels of success in 2022.

Cure JM will support research through our 2 grant cycles per year with up to $200,000 of grants available per cycle.

Cure JM has invested in a drug discovery program at the National Center for Advancing Translational Sciences.

We will strengthen existing Cure JM research and treatment centers; and ultimately add 2-5 additional research and treatment centers to increase our research capabilities and improve patients' access to expert treatment.

Cure JM Foundation has established regional chapters and a National Walk Program to ignite our fundraising efforts and bring JM families together.

Cure JM has held 9 annual national conferences for JM families and will continue to sponsor this annual event. Cure JM also holds regional conferences in many areas and plans to expand upon these events.

Cure JM provides families with educational and support materials to help them with their battle against Juvenile Myositis. We funded the first-ever book about JM called "Myositis and You," a 465-page book with contributions from over 75 medical professionals.

Cure JM is launching the Cure JM Clinical Care Network and funding our fifth Center of Excellence. We have almost $5 million committed to research and new drug development, including several clinical trials that, if successful, will bring improved treatments to our children.

Cure JM Foundation has an Executive Director with over 30 years of nonprofit experience, and we have hired many dedicated staff, including a Chief Scientific Officer, Director of Development and Family Engagement, Mental Health Coordinator, Communications Manager, two Development Managers, Development Associate, and a Data Program Manager.

We have a talented and passionate Board of Directors who are connected to a patient with JM, and they all dedicate many hours to the organization. Cure JM has over 200 volunteers who serve in various roles, such as Family Support Network Representative, Grandparent Support Network Representative, Fundraising Coach, Committee Member, and more.

Our National Leadership Council has members representing every area of the United States.

Cure JM Foundation has made significant progress already by raising more than $19 million for JM research and education. The Foundation has helped establish 5 Centers of Excellence at Children's Hospital of Chicago Research Center and George Washington University in Washington, D.C., Duke Children's Hospital and Medical Center, Seattle Children's Hospital, and University of California, San Francisco. Cure JM has held 9 annual national educational conferences for families affected by JM, and 7 conferences for the JM medical community, offering CME credits to medical professionals. The Foundation funded the first-ever book solely about JM entitled "Myositis and You". Cure JM provides additional educational materials including Welcome Kits, videos for newly diagnosed patients, brochures, and more. Cure JM Foundation has a strong Family Support Network for the families affected by JM, and a Grandparent Support Network for grandparents of JM patients. Cure JM has a comprehensive website with JM resources and active support communities on social media. There are several new treatments for JM on the horizon.

Cure JM is launching the Cure JM Clinical Care Network and funding our fifth Center of Excellence. We have almost$4 million committed to research and new drug development, including several clinical trials that, if successful, will bring improved treatments to our children.

Cure JM brought 5 Cure JM families before the FDA to raise JM’s profile andtestify for the critical need for better drugs, this is an important step forward to raising our profile with the FDA to move new and re-purposed treatments through the drug pipeline. Cure JM is providing funding to moveclinical trials
forward to find new and better treatments for JM.
Cure JM has invested $5M in research investments to advance treatments and carefor JM.

Cure JM has supported breakthrough genetics studies at the world-renowned Center for Applied Genomics at Children’s Hospital of Philadelphia.

Cure JM has supported major drug discovery initiatives at the National Center for

Cure JM is advancing Translational Sciences at NIH and has formed
partnerships with biotech companies with investigational new autoimmune drugs.

For families, Cure JM has provided vital resources and connections for over 3,000 patients and families, supported four major Centers of Excellence to advance JM research and deliver the highest quality of care to patients, including second opinions. Cure JM also provides education to families through monthly Town Halls with healthcare providers and Family News publications.

Since its inception, Cure JM has invested more than 90% of contributions directly into research and programs to move its mission forward.

Since inception Cure JM has invested over $19 million to find better treatments and improve care for children with JM.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Families of patients with Juvenile Myositis (JM). Medical professionals who treat patients with JM.

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

    Electronic surveys (by email, tablet, etc.), Community meetings/Town halls, 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 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?

    We recently started the Cure JM Clinical Care Network: www.curejm.org/care This network links patients and medical providers, as well as linking them to the Cure JM Foundation for resources and community.

  • 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?

    It has helped us to enhance the programs we offer, and the resources we develop.

  • 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 engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback,

Financials

Cure JM Foundation
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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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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 JM Foundation

Board of directors
as of 07/06/2022
SOURCE: Self-reported by organization
Board chair

Mrs. Nikki Hahn

Kristine Alderfer

No Affiliation

Shari Hume

No Affiliation

Tom Hume

Mitali Dave

No Affiliation

Karen Berman

Zachary Harrison

No Affiliation

Randy Putt

No Affiliation

Nikki Hahn

No Affiliation

Kristine Alderfer

No Affiliation

Tracy Van Ness

Kevin Coffey

Tim Shelby

Dave Maher

Justin Whitney

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? No

Organizational demographics

SOURCE: Self-reported; last updated 2/28/2022

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
Decline to state
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data