Family and Patient Support
The Myocarditis Foundations mission is threefold: to raise money for research to further our scientific understanding of myocarditis and seek better treatment options and a more accessible diagnostic, to educate both physicians and the public about the disease, and to support patients and families who have lost loved ones to the disease. The singular goal of the mission of The Myocarditis Foundation is to save more lives.
The Myocarditis Foundation takes the support of patients and families very seriously. Almost universally, victims of myocarditis have never heard of myocarditis before the disease has affected them or their loved one. Myocarditis is a disease of a young, healthy, often athletic population. It is the third leading cause of unexpected Sudden Death in the 18-34 year old age range. Families who have lost loved ones due to Sudden Death from myocarditis often do not get a diagnosis from weeks to months later when the autopsy report is released. Upon receipt of the report, they are shocked to receive a diagnosis of a disease they never heard of before. Because the victims are young, healthy and often athletic, patients and families do not understand how a heart condition could have developed and they were not aware that the victims were potentially catastrophically ill. Often parents are guilt-ridden, feeling that they missed physical clues that could have prevented the tragic outcome.
Annual Patient and Family Support Meeting
The Myocarditis Foundation brings patients and families together once a year for our Annual Patient and Family Support Meeting. These meetings provide education from leading myocarditis clinicians and researchers, classes on dealing with grief and loss, social time for participants to share their stories and support each other, and convene a service of remembrance to honor its victims. Most participants find this experience very helpful.
The Myocarditis Foundation staff, management and Board of Directors are experienced with myocarditis, as either patients, caregivers, physicians who care for myocarditis patients, researchers, or families who have experienced loss due to myocarditis. We can speak knowledgeably to victims and victim’s families about the disease. We are experienced with both the physical and emotional toll this disease can cause. The Myocarditis Foundation staff is available by phone, email, through our website and on Facebook. We are accessible, knowledgeable and compassionate. Our primary goals are to help you understand the disease that has adversely affected your lives and to let you know that you are not alone in your experience with the disease.
Raising awareness is an extremely important aspect of fighting this disease. Myocarditis Foundation staff support victims activities and events to raise funds for research and raise awareness in their own communities. We provide educational materials, marketing logo items, and speakers by invitation. We need your help to fight this disease. Please talk to our staff about hosting an event. Go to our Plan an Event page for more information about fundraising.
The Myocarditis Foundation is THE resource for information, education and patient and family support both nationally and internationally, for myocarditis. You’ve come to the right place.
Check out other sections of the Myocarditis Foundation website. Read Real-Life Stories, recent news on the Blog, and find out how to Get Involved.
[contact-form-7 id=”4″ title=”Contact form 1″]