Cure JM Foundation
Because a cure can't wait.
Programs and results
What we aim to solve
Our programs
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.
JM Research and Treatment Center at George Washington University
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.
Research Grants
Cure JM has supported over 120 research grants, and continues to fund research to find better treatments and ultimately a cure for JM.
Family Conferences & Family Support
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.
Where we work
Awards
2022 Top Rated 2022
Great NonProfits
Affiliations & memberships
Great Non Profits nonprofit 2022
Photos
Videos
Our results
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 4,600+ 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
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
-
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
-
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
Unlock nonprofit financial insights that will help you make more informed decisions. Try our 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.
Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
SubscribeBuild 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.
Connect with nonprofit leaders
SubscribeBuild 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 directorsas of 09/19/2023
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
Tracy Van Ness
Tim Shelby
Dave Maher
Justin Whitney
Denise Koch
Brent Hauser
Michelle Best
Debbie Daum
Julie Houpt
Anna Schwartz-Ramsey
Board leadership practices
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
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
No data
Gender identity
No data
Transgender Identity
No data
Sexual orientation
No data
Disability
No data