MYOCARDITIS FOUNDATION’S 2ND FAMILY MEETING FOR 2019 HELD IN PHILADELPHIA
Friday the 13th of September, 2019, did not scare away the 50 patients and family members who attended the Myocarditis Foundation’s second Family Support Meeting for the year, in Philadelphia, Pennsylvania.
The Hilton Garden Inn, was the site of the meeting which continued into Saturday. Half the attendees sadly were new to our family. The family members who have been with us before, resoundingly affirmed the support that they gain from attending and catching up with each other and hearing of the new updates on the research being conducted.
- United States
- Other Countries
The Myocarditis Online Support Community has members from around the world!!
MYOCARDITIS ONLINE SUPPORT COMMUNITY IS ACTIVE
The Myocarditis Foundation’s support community now has 255 members from 15 different countries around the world!! Patients, caregivers and friends are having valuable conversations. Recently many newly diagnosed patients and families have reached out for support. Click on a link below to view a conversation and lend a supportive word if you can.
Thankful I Found a Myocarditis Community ….. from a 23 year old nursing student
16 Year-old Healthy Son Just Diagnosed ….. from a mother in Minneapolis
Myocarditis – Living With It ….. from Jonah212 who was diagnosed in February
Visit myocarditis.inspire.com to participate
% More Men Than Women
32nd Leading Cause of Death Worldwide
% of Sudden Death in USA
Cases Last Year
Welcome to the website of the Myocarditis Foundation. Founded in 2005 by Dr. Leslie T. Cooper and Candace Moose, the Myocarditis Foundation has made it our mission to fund research, facilitate awareness and provide support to families affected by this rare disease. We’re a private 501 (c) nonprofit myocarditis organization that dedicates all our resources to helping patients, survivors and the families of those who have lost their lives to myocarditis.
What is Myocarditis?
Myocarditis causes inflammation of and eventual damage to the heart muscle. Thousands of individuals in the U.S. are diagnosed with myocarditis every year and the disease is believed to account annually for anywhere from 5 to 20 percent of sudden deaths. While giant cell myocarditis can often affect those with autoimmune disorders, the more common viral myocarditis often impacts healthy individuals of all ages, including children and infants. There is no cure for myocarditis, although effective treatments are available if the disease is caught early. The long-term side effect is Heart Failure which can lead to the need for mechanical support and or a heart transplant.
Classed as a rare disease, myocarditis remains mostly unknown to the public. Because of this lack of awareness and the risk the condition poses, the Myocarditis Foundation has identified two key goals. First, we are committed to providing accurate, up-to-date information for patients, their families and medical professionals alike. Second, we support the scientific advancement of the disease’s diagnosis and treatment to help save lives.
How We Help
Through the support of many volunteers and donors, the Myocarditis Foundation is able to provide a number of services in support of individuals with myocarditis, their loved ones and the healthcare providers committed to their care. These include:
- Conferences and lectures for patients and professionals
- Information clearinghouse for the public and healthcare providers
- An educational website with additional resources
- Research grants for post-doctoral myocarditis researchers
- Maintaining a listing and Myocarditis Foundation contact on the National Organization for Rare Diseases (NORD), the primary nongovernmental clearinghouse for information on rare conditions
We’re also proud to offer important programs, such as our ER Nurse Education Program, a support community and the world’s first myocarditis BioBank with adult and pediatric samples from around the world to encourage rapid advances in research.
Toward a Cure
Featured Real Life Story
Sept 6, 2017 is a day our family will never forget. Before this date, Gracie was happy, healthy and rarely sick.