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.
The Schiano Family, who lost their son and nephew Lee Andrew Hirsch to Viral Myocarditis in 2015, provided the welcome gift to all attendees. The backpacks, that were provided by the Myocarditis Foundation, were filled by the Schiano Family with various food items that originated in Philadelphia. Lee loved to provide delicious food to others, so what better way to honor his memory than by sharing these yummy treats!
Giustina Schiano, Board Member and Family Advocate for the Foundation, was the Chairperson for the event which opened with a Blessing by Pastor Lou La Fazia, of Brielle, New Jersey.
The Welcome Dinner was a buffet of various “Tastes of Philadelphia”, consisting of Philly cheesesteaks, Italian and Mexican dishes, and ended with desserts and famous Philadelphia Soft Pretzels.
Dr. Leslie Cooper, Co-Founder of the Foundation, spoke about Myocarditis, diagnosis and treatment.
All attendees were invited to share their myocarditis stories with the others. It was a way to introduce themselves and to meet others who were so similarly affected by the disease that changed their lives forever.
Our meeting is truly like a family reunion…a family though that no one would ever want to be a part of, and forever held together by the disease that has affected them all in one way or another.
The evening ended with a Candlelight Vigil, conducted by Pastor Lou, remembering those we have lost and honoring our survivors.
The meeting had ended for the evening, but no one was looking to leave… The attendees felt very comfortable speaking with the others, as well as the Cardiologists and Researchers who were present to answer any questions they had.
Saturday’s meeting opened with Candace Moose sharing the Myocarditis Foundation’s beginnings.
The history of the Foundation’s education efforts was shared by Genevieve Rumore, Executive Director, with emphasis on the past 2 years’ efforts and the training of over 4,000 nurses and nurse practitioners on myocarditis, and how they could “think outside the box” to potentially diagnose early myocarditis. Without a single diagnostic tool to help them, myocarditis remains difficult to diagnose.
The Executive Director continued with explaining the Foundation’s Research Fellowship Grant process. A plaque, honoring the Lundy Family for their tireless fundraising efforts, was awarded to Steven and Vickie Lundy. Through their efforts, a third named Research grant was awarded to Dr.Taejoon Won, and named in memory of their 14 year-old son Rhett, whom they lost to Viral Myocarditis in 2014.
Dr.Taejoon Won, PhD, the 2018 MF Grant recipient, spoke to the families on his research that is being conducted at Johns Hopkins University, in Baltimore, Maryland. The families were very pleased to learn about the research and what it could mean in the future to help prevent myocarditis from occurring.
After a brief break, Dr. Mario Deng and Dr. Jack Price gave an update on the Myocarditis Foundation Biobank, how it will work, and what it will mean to our families and on-going research.
The families then split up depending on whether they were survivors or if they had lost a loved one to myocarditis. Those who were survivors went to the Heart Failure Society Association’s Family Education Day to participate in interactive educational sessions with leading experts in the field of diseases that can cause heart failure, of which myocarditis is one. Those who lost loved ones, remained at the Hilton Garden Inn, to particip
ate in a workshop and engage and share with others while creating a unique collage of self-expression moderated by Carmela Schiano, a Certified Life Coach. These family members then joined the others at the HFSA to hear representatives from the FDA speak about Clinical Drug Trials and how to improve involvement of the families/patients in the planning process.
The closing dinner was held at a local restaurant where our families shared that they were looking forward to meeting again next year, and hearing about any new updates and research that is occurring, as well as reuniting with their
friends in the Myocarditis Family.
Joseph Rumore, President of the Foundation, thanked the families for attending, and a big thank you was also given to Giustina Schiano, a MF Board Member and Family Advocate, for her tireless efforts in making the Family Support Meeting such a huge success.