The Myocarditis Foundation’s 5th Annual Family Meeting was held on Friday June 23rd at the Empire Hotel in NYC. Fifty-five family members were in attendance. We started the meeting with a moment of silence for a prayer for all those that have been affected, and those that are still battling with the disease.
We had the honor of having 7 Giant Cell Myocarditis Survivors in a room together, ranging in time frames of a few months to 17 years from when they were diagnosed.
The meeting started with an icebreaker so that everyone could get to know those that they did not know before. We had a number of new families present so this really helped to get everyone more comfortable with each other.
The current MF Fellowship Grant Recipient, Dr. Guobao Chen PhD, from Johns Hopkins University, spoke on his research that is being done. He is working on preventing those affected by Myocarditis from going on to developing Dilated Cardiomyopathy and Heart Failure. He reported that in Myocarditis induced Dilated Cardiomyopathy in children, 60% go on to needing a heart transplant. This is extremely important work that he is conducting and we wish him much success in his research.
The President of the Foundation gave an overview of the direction of the MF, and the starting of Regional Chapters in the near future. A family member of one of these chapters will have a seat on the Board of Directors so that input can be shared more closely back and forth between them.
We had a panel discussion where the attendees could ask the doctors and researchers their questions. We also had smaller discussion groups where the attendees shared their stories throughout the day at the extended lunch period and during the “round table” discussions. Our guest speaker, Dr. Doug Luffborough PhD, shared the story about his childhood and how he was motivated to make something positive from the negativity in his early life.
Dr. Cooper and Dr. Fairweather shared the importance of us starting a Bio-Bank. This is where banked blood and tissue samples from myocarditis patients from all over the world will be housed in one location. Collaborative researchers can access those samples and share their research with each other. We believe that this will lead to a faster realization of a cure. The accessibility of obtaining larger research grants, which are restricted to those that have international collaborative relationships, which we will now have, will become a reality.
Many positive comments were made in the evaluation forms that were completed and submitted at the end of the day.
The Meeting culminated with a lovely dinner in a private dining room at Bar Boulud Restaurant where we were able to share more about ourselves with our new friends within the myocarditis family. It truly sounded like a large family gathering where there was a lot of interaction and laughter amongst people who were reconnecting after a period of time away from each other.
Contact information was given and will be shared amongst the attendees so that the friendships and support of each other can continue throughout the year. The tentative date for the Gala in 2018 is June 21, 2018, and the tentative date for the Family Meeting will be June 22, 2018. These dates are only tentative right now. The Gala will tentatively be at the Mandarin again, but we will be looking for alternative housing and venue site for the Family Meeting.
