Myocarditis Foundation
Programs and results
What we aim to solve
This is a rare disease and has only recently been taught in medical schools. Education is the key to early diagnosis and early diagnosis provides for the best outcomes for those affected by myocarditis. Physicians, sadly thanks to the connection with COVID, are more interested in learning more about the disease. Through interviews and social media, we are stressing what to look for during medical history, physical exam and what tests to order to rule it in or out. We have continued to educate Emergency Room Nurses and Nurse Practitioners, in the belief that they will share this information with their collaborating physicians. We have augmented our myocarditis education packet and it is now on our website for everyone, not only the medical community to access. The more that one knows about this disease and can advocate for the patient, the better the earlier correct diagnosis and thus better outcomes to the disease.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Patient & Family Support
The Myocarditis Foundation emotionally supports both patients who have been diagnosed with myocarditis and families who have lost loved ones to the disease.
Research
We are the only nonprofit dedicated completely to the disease myocarditis, making it critical that we continue to award grants to researchers around the world dedicated to finding better ways to diagnose, treat, and prevent myocarditis, all in an effort to save lives from heart failure and sudden death.
Awareness
The Myocarditis Foundation makes awareness of myocarditis one of its top priorities. Myocarditis affects hundreds of thousands of people each year, yet many of these cases go undetected or misdiagnosed. Sadly, many of these misdiagnosed cases lead to sudden cardiac death. The Myocarditis Foundation knows that the more information we can provide to communities, medical facilities, and medical professionals, the more lives we can save.
Where we work
Affiliations & memberships
American Heart Association, Inc. 2020
National Organization for Rare Disorders - Member 2021
Texas Association of Nonprofit Organizations 2020
NORD Platinum Status 2022
External reviews

Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Evaluation documents
Download evaluation reportsDemographics of Users of Website; Traffic to Website; Interested Topics for Search of Website
This metric is no longer tracked.Totals By Year
Population(s) Served
Age groups, Ethnic and racial groups, Family relationships, Health, Religious groups
Related Program
Awareness
Type of Metric
Other - describing something else
Direction of Success
Holding steady
Context Notes
New users continue to search out information on myocarditis especially with the increased awareness of myocarditis. Most of our users continue to be new on a monthly basis, with 85% being new.
Number of new website visitors
This metric is no longer tracked.Totals By Year
Related Program
Awareness
Type of Metric
Output - describing our activities and reach
Direction of Success
Holding steady
Context Notes
Our Click thru rate (CTR) is consistently above 10%. Most industries have a CTR of 4-6%.
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Reports and documents
Download strategic planLearn 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 primary goal is to save more lives from this disease. All our efforts are put into this primary goal..
What are the organization's key strategies for making this happen?
We provide information on the disease, speak to the public to raise awareness of the disease, and educate physicians on the early warning signs of the disease, so as to better diagnose and treat its victims. We are constantly updating our website with up to date pertinent information on the disease. We have expanded our outreach not only through our website and social media posts but also through Zoom call "Chats" for patients and families with our International Medical Advisory Board (MAB) Cardiologists and Researchers.
Our Co-Founder and Board Member, Dr. Leslie Cooper travels the world virtually, now due to the COVID Pandemic, speaking with physicians about the disease.
We have put together a Myocarditis Education Program that we have posted on our website, helping to educate nurses and physicians around the world with ways to "think out of the box" to diagnose the disease since there is not a specific diagnostic tool to do so as of yet.
We have expanded our MAB and are enlisting them to be more proactive with helping spread the word about myocarditis. We are working on expanding our Board of Directors as well with the same goals.
What are the organization's capabilities for doing this?
We are fully committed to accomplishing this with our working Board of Directors, Medical Advisory Board, and a Executive Director who keeps the Board focused on our mission and goals.
We have increased our social media presence to drive people to our website.
We have revised our website and continuously updating it to keep it easier for visitors to navigate and get the answers they are looking for.
What have they accomplished so far and what's next?
Operationally, we have added to the staff that we needed. Medically, we have not irradiated the disease but have moved the needle in the right direction with better awareness and education of physicians. There are more survivors that we speak with then families of deceased victims of the disease. The awareness and education that has been shared has allowed more people affected by the disease to be more rapidly and correctly diagnosed.
We have responded to the needs of our clients by being accessible via social media and the internet in keeping with the times. We have hired consultants to assist us in areas where we do not have the expertise.
We will be looking at developing Myocarditis Foundation Chapters in 2021 around the country, that can help raise awareness of the disease, provide education and help with funding of our programs for myocarditis research and to continue to promote our mission.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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Which of the following feedback practices does your organization routinely carry out?
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
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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.
Myocarditis Foundation
Board of directorsas of 05/16/2023
Joseph Rumore
The Myocarditis Foundation
Term: 2023 - 2024
Michael A. Linn
EmGen Enterprises
Term: 2023 - 2024
Leslie T Cooper, MD
Mayo Clinic, Jacksonville, FL
Candace C Moose
No Affiliation
Louis Romano
Homewell Cares
Jack Price, MD
Texas Children's Hospital
Joel Aranson
Founder and Chairman of National Sporting Good Corporation
Francine Andrea
Retired Vice-President at Felician University
Giustina Schiano
No Affiliation
Gary Kubera
Chemical Industry Executive and CEO
Jamie Giani
Lawyer/ Lost a child to VM
Dr. Bettina Heidecker, MD
Cardiologist
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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:
The organization's co-leader identifies as:
Race & ethnicity
Gender identity
Sexual orientation
Disability
We do not display disability information for organizations with fewer than 15 staff.
Equity strategies
Last updated: 01/28/2021GuideStar 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
- 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.
- 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.