June 7th-8th, 2014 in Point Pleasant, NJ
The Myocarditis Foundation was honored to be able to hold its Annual Patient and Family Support Meeting for the second year in a row. This meeting has proved to be invaluable to the patients and families affected by myocarditis, as the Myocarditis Foundation provides the opportunity for these individuals to come and meet several myocarditis experts, learn about the newest research, and meet others who know all to well the exact difficulties and pain this disease can bring to patients and their families.
This year’s meeting kicked-off with a sunset cruise down the Manasquan river where families were able to interact with each other and members of the Myocarditis Foundation’s Board of Directors, share their experiences, and ask questions in a casual atmosphere. The highlight of the evening was a memorial service for all of those who had lost someone to myocarditis. Each family received a butterfly and when their name was called they came up, announced the name of their loved one, and then released their butterfly. It was a moving experience and was a perfect way to honor the many lives myocarditis has taken.
The next morning, breakfast was served and families were able to once again talk with one another until the start of the meeting. The meeting began with a talk by Director, Lindsey Davis highlighting the accomplishments of the Myocarditis Foundation and explaining the need for continued fundraising and support from the myocarditis community. Following Mrs. Davis was a talk by myocarditis expert Dr. Leslie Cooper of the Mayo Clinic. This was one of the highlights of the meeting, as Dr. Cooper was able to explain he disease in detail, highlight some of the ongoing research, and answer the questions poised by the patients and families in attendance. Katelyn Stafford, a PhD candidate and myocarditis researcher in Dr. Fairweather’s lab at Johns Hopkins University, was the next guest speaker providing information on the cutting-edge research being done around the world trying to find better ways to diagnose and treat myocarditis.
The Myocarditis Foundation had asked Paul Groce and Michele Coia-Veston to both present their myocarditis stories at the meeting. Mr. Groce , a survivor of myocarditis, told his harrowing story of the onset, diagnosis, and long recovery of such a debilitating disease. You can read Mr. Groce’s story here. Mrs. Coia-Veston lost her son Nino after a reoccurring case of myocarditis in her son’s transplanted heart. Her story was tragic and heartbreaking, but showed the true love and support needed by friends, families, and communities when we lose someone to this terrible disease. We thank Mr. Groce and Mrs. Coia-Veston for their time, bravery, and strength in sharing their stories.
The third scientific talk of the meeting was by pediatric cardiologist and heart failure expert Dr. Jack Price of Texas Children’s Hospital. Dr. Price was able to explain myocarditis in children and some of the new treatments used at Texas Children’s Hospital for those diagnosed with myocarditis and heart failure. The meeting’s talks concluded with a special guest speaker, Chris Ann Waters who is a grief expert. She talked with the families who had lost someone about coping mechanisms and working your way through the grief process. Ms. Water’s resources can be found on her website and are posted here on the Myocarditis Foundation’s website as well.
The Myocarditis Foundation’s Patient and Family Support meeting concluded with lunch and an awards ceremony. The Myocarditis Foundation awarded three awards to families who have made significant strides in the political activism for myocarditis, autopsy results, heart failure, and rare disease legislature. Michele Coia-Veston, Giovana Caccialanza, and the Skowronski Family all received awards honoring their political gains with their local, state, and national governments. Click here to read about the rare-disease legislature of 2014 and ask your local representative to support this bi-participant bill! Click here to read about the success of the Skowronski family’s political activism.
The overall consensus from the families in attendance was overwhelmingly positive. The highlights for the families was meeting others who have been affected by myocarditis and talking with the experts and learning about the ongoing scientific research that the Myocarditis funds and supports.
The Myocarditis Foundation would like to thank Boston Scientific for a generous grant they awarded to the Myocarditis Foundation to make this meeting possible. Bellin Health Care Systems of Green Bay, WI also donated significant funds to ensure all parts of this important Family Meeting were covered, allowing for the Myocarditis Foundation to continue using its funds to support a mission of saving lives. In-kind donations were also made by the Firefly Restaurant at the White Sands Resort and Joe Leone’s catering; both of the Point Pleasant community.
Above all we would like to thank the many families who continue to support the Myocarditis Foundation in all that we do. We could not provide support and recourses to families or fund the awareness and research programs without support from our myocarditis families. One participant shared “The service on the boat with the butterflies was a very nice way for all of us to share our grief and help support each other. I think it really drew everyone close together as a big family, which is what we are.” We couldn’t agree more, we love and cherish our myocarditis family.
One woman who attended summed up the experience perfectly: “After the Myocarditis meeting I had learned more about the disease. The statistics and heart diagrams on the slides helped me to better understand heart dysfunction, heart failures and sudden deaths. Listening to the testimonies caused me to appreciate even more the hard work the Foundation is doing to save lives and educate individuals. Continue striving to increase awareness in the medical field as well as the public. I need to do more and I will do more. I love you guys very much!”
The Myocarditis Foundation hopes to hold a Patient and Family support meeting every year in the United States, with the location changing each year. Please check our website and Facebook page for updates about happenings of the Foundation and for upcoming events. In the meantime, all talks are posted on the Myocarditis Foundation’s YouTube channel.