At least once a year the Myocarditis Foundation holds an In-Person Family Meeting where we all get together at a hotel, often near where the Heart Failure Society of America is having their annual meeting. We invite new Patients and Families, along with our previous attendees, Cardiologists and Researchers, who specialize in Myocarditis and Pericarditis, to share our stories and learn that they are not alone in their journey and learn the latest developments in these fields.
It was a wonderful success helping new families better understand the Myocarditis Journey that they are on as survivors or having lost loved ones. The new attendees to our “Family” truly had no idea what to expect despite our explanation of what it involves. The comments on our evaluations that the attendees handed in at the end of the meeting proved that we accomplished what we had hoped for…to help others understand more about the disease and what the Myocarditis Foundation does to bring others together and provide them with resources moving forward.
We had attendees from 15 different states as well as from Canada, and the U.K. in attendance.
Last year, we started to invite representatives from various Medical Device and Pharmaceutical Companies, that support medications, treatments, and mechanical support for these diseases, or are working on medications, treatments, and diagnostics of the diseases. We had feedback from them that they never realized the impact that these diseases have on patients and their families and were thankful to be invited to learn more about the Myocarditis Foundation and what it does for those affected.
In addition, the Pharmaceutical Companies who are manufacturing medications that deal with the long-term complication of Heart Failure see the patients first- hand and better understand the importance of their work.
There are two Pharmaceutical Companies, Kiniksa Pharmaceuticals and Cardiol Therapeutics, that are working on medications to treat Pericarditis and Myocarditis. They have either developed or are having Clinical Trials for a medication for Recurrent Pericarditis, Acute Myocarditis, and Dilated Cardiomyopathy which can be a complication of these diseases.
This month we are dedicating our email newsletter to sharing with you what the specialists and researchers who participated in our Family Meeting spoke to us about. We understand that many of you wanted to but could not attend for one reason or another, and we want to share what was told to those who attended. While the personal interactions that took place in our break-out sessions, candlelight ceremony, and conversations over dinners cannot be shared we hope that you gain some insight of what is occurring in the fields of Myocarditis and Pericarditis.
