Myocarditis Foundation

aka The Myocarditis Foundation   |   Kingwood, TX   |  www.myocarditisfoundation.org

Mission

Myocarditis is a poorly understood, under-diagnosed and often misdiagnosed disease which can progress rapidly to heart failure and death. The Myocarditis Foundation's primary mission is to provide relevant, accurate, up-to-date information about the nature of myocarditis and its various presentations to a world-wide audience of medical professionals and the public at large. The Foundation attempts to bridge the gap in awareness and understanding of the diseases that cause inflammation and damage to cardiac tissue, so that effective treatment can be administered in a timely fashion and more lives can be saved.

Ruling year info

2005

President

Joseph C. Rumore

Medical Director

Dr. Leslie T. Cooper

Main address

3518 Echo Mountain Drive

Kingwood, TX 77345 USA

Show more contact info

EIN

20-2657059

NTEE code info

Heart and Circulatory System (G43)

Specifically Named Diseases Research (H80)

Adult, Continuing Education (B60)

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

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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.

Population(s) Served
Adults
Children and youth

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.

Population(s) Served
Adults

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.

Population(s) Served
Adults
Children and youth

Where we work

Affiliations & memberships

American Heart Association, Inc. 2020

National Organization for Rare Disorders - Member 2021

Texas Association of Nonprofit Organizations 2020

Our results

SOURCE: Self-reported by organization

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

Demographics 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

Increasing

Context Notes

New users continue to search out information on myocarditis especially with the increased incidence of myocarditis due to COVID-19 and their questions relating to what to expect once it is diagnosed.

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.

Our primary goal is to save more lives from this disease. All our efforts are put into this primary goal..

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.

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.

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

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

    Focus groups or interviews (by phone or in person), 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 identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    We have instituted Zoom meetings for expanded outreach and receive immediate feedback on them. We have expanded our expert panel to include European physicians to assist with their socialized medicine knowledge. We have included researchers who can better speak to the COVID situation around the world and what is being done.

  • With whom is the organization sharing feedback?

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

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

  • What challenges does the organization face when collecting feedback?

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

Financials

Myocarditis 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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lock

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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Myocarditis Foundation

Board of directors
as of 10/31/2022
SOURCE: Self-reported by organization
Board co-chair

Joseph Rumore

The Myocarditis Foundation

Term: 2022 - 2024


Board co-chair

Michael A. Linn

Stryker

Term: 2021 - 2023

Leslie Cooper, MD

Mayo Clinic, Jacksonville, FL

Candace Moose

No Affiliation

Louis Romano

Homewell Cares

Jack Price, MD

Texas Children's Hospital

Joel Aranson

Founder and Chairman of National Sporting Good Corporation

Stephanie Kennan

Sr. VP Maguire Woods Consulting

Francine Andrea

Retired Vice-President at Felician University

Giustina Schiano

No Affiliation

Gary Kubera

Chemical Industry Executive and CEO

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 10/31/2022

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
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Decline to state
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

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

Equity strategies

Last updated: 01/28/2021

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 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.