The Myocarditis Foundation’s Annual Family Support meeting was held at the Statler Hilton Hotel on July 10 thru the 13, 2024.
It was a privilege and honor to have been able to facilitate the program this year, along with Genevieve Rumore and Melissa Graham. As well as being a Director and Family Advocate for the Foundation, I am the proud mother of Lee Andrew Hirsch, a victim to Myocarditis. The family meetings have always been a source of comfort for me.
The Statler was a unique space for the meeting this year. With wonderful conference space and lodging, it offered wonderful amenities to our families when we were not in session. We received unanimous positive feedback on the venue!
This year’s agenda was expanded to include a focus on well-being, self-care and healing.It was held over two and half days as opposed to one and half days as in the past.
Here is an overview of our weekend:
The weekend started on Thursday evening with a welcome reception in the Garden Area of the hotel. This was a chance for old friends to meet again and new friendships to begin. We all shared our story on how Myocarditis has affected our lives. It was heartfelt and inspiring. We ended the evening with a candlelight ceremony honoring loved ones who are not with us, survivors, fighters, their caretakers, and those in the medical field who guide us.
We adopted a seating plan throughout the meeting which enabled the attendees to sit at a different table for each session so they can meet and speak to new people. Attendees, researchers, presenters, doctors all sat together. This was well received as one of the comments was –
“The time to talk to others was very helpful. A great job moving people around so we could talk to each other.”
We were fortunate to have three leading medical experts in myocarditis. Dr. Leslie Cooper, Co-founder and Medical Director of the Myocarditis Foundation and Chair of the Cardiovascular Department at Mayo Clinic in Jackson, Florida; Dr. Jack Price, Pediatric Medical Director of the Myocarditis Foundation, and Founding Director of the Pediatric Cardiovascular Intensive Care unit at Texas Children’s Hospital in Houston and Dr. Nicholas Hendren, Cardiologist at University of Texas Southwestern and Medical Director for Heart Failure at Parkland Hospital, both located in Dallas.
All shared their expertise in the diagnosis and treatment of Viral Myocarditis and Giant Cell Myocarditis as well as spoke about the relation to Myocarditis and the Covid vaccine emerging diagnostic tests and treatments of the disease.
Dr. Katelyn Bruno, PhD, is an Assistant Professor of Cardiovascular Medicine and Director of Bruno Translational Cardio-Immunology Laboratory at the University of Florida, and the Secretary of the Myocarditis Foundation’s Medical Advisory Board. This year, Dr. Bruno introduced the group to her current Translational Research for Myocarditis Advancements.
We heard from Dr. Mark Bechter, Vice President of Operations and Patient Advocacy of Kiniksa Pharmaceuticals, LTD. Dr. Bechter spoke about the causes, symptoms, diagnosis and treatment of Pericarditis. In addition, Kiniksa Pharmaceutical was a grant sponsor for our event.
Dr. Kelly A.D. Narine, PhD, Director of Medical Affairs for Cardiol Therapeutics, Inc. presented an update on the research and clinical development of the anti-inflammatory disease. Cardiol Therapeutics was also a grant sponsor for the event.
Dr. Swati Sharma, PhD is a researcher in Dr. Silvio Antoniak’s Laboratory at the University of North Carolina, Chapel Hill. Dr. Sharma is the 2023 Myocarditis Foundation Fellowship Research Grant Recipient. Dr. Sharma updated our group on her research “Platelet PAR4 in Coxsackie Virus Induced Myocarditis”
Participants were able to ask questions during the presentations throughout the weekend as well as a lively panel discussion on Saturday afternoon. Before we rested for the day, participants were able to speak to Drs. Cooper, Price and Hendren one on one privately.
“Being able to ask questions freely was very important”
One of the driving focus this year when coordinating this weekend, was not only how much knowledge we can give our participants, but what can we offer that would help them in their well-being.
We had breakout sessions which focused on three groups, our survivors and fighters, caretakers, and those who lost a family member.
The Survivors and Fighters group included viral and giant cell myocarditis patients which was a participant driven round table discussion and included Dr. Cooper and Dr. Bruno. Many of the topics discussed were how to live with the disease and coping with the stress of it recurring.
Our caretaker group included Dr. Hendren. This group talked and offered advice to each other on how to deal with a loved one’s illness and the stress that it comes with. They were able to ask questions of Dr. Hendren as well as what a physician would like a caretaker to know and how they can facilitate in the treatment of the disease. Dr. Hendren also gained insight of how a caretaker feels and what they would want from a physician as well. The feedback was exceptional. The participants met others who share the same experiences.
Our third group, families of victims of myocarditis was led by Renee Vejvoda, CEO and Creative Director of Live, Express, Grow your Faith. Renee spoke about healing and guiding them to move to the “Other Side of Yesterday”. The participants were able to tell their stories while going through the healing process of Hope, Empathy, Acceptance and Love (HEAL). This is the first of this kind of session geared to this group and was very well received.
”Meeting was very engaging and well done”
“Amazing to be able to connect with everyone as it can feel very isolating- a huge thank you!!!”
“I now know – I am not the only one “
One of the struggles by most of our attendees, whether a patient, caretaker or have lost someone is keeping healthy. Nutrition plays a large part of that.
Anne-Marie Alford, MS, RD, LD, a registered dietitian from Doherty Nutrition in Dallas was a presenter. She focused on nutrition and diet for not only those presently suffering from myocarditis, but those of us who are survivors. She was able to explain the effects on our bodies when taking medications. She also focused on overall health. The questions were interesting and informative to all. Ms. Alford and the topic was well received.
“Nutrition and yoga sessions were great”
“The nutritionists were excellent. In fact, I plan to consult them”
One of the things that our participants have gotten over the years is the chance to meet those with the same struggles. With that in mind, we introduced group activities that would build friendships and camaraderie. Those included Chair Yoga, Soul Collage® and Bowling.
Chrissy Cortez-Mathis was the Chair Yoga instructor. Chrissy’s focus on breath and body awareness helped build our skills of attention and focus with curiosity and kindness. Each practice is an opportunity to connect with the body and mind as well as appreciate the abilities that are available to us in that moment.
Soul Collage® is an easy intuitive collage process for self-discovery and community. This session was led by Certified Facilitator Vickie Lundy. Vickie is a member of the Myocarditis Family as she lost her 15-year-old son, Rhett to Myocarditis in May of 2013. Her connection to everyone in that room made the session very powerful.
“Best Social activities of any meeting”
“All activities planned were top notch”
One of the activities that have been always well received in past meetings, were meals. This gave everyone an opportunity to speak to others in a more relaxed atmosphere. Scout, one of the venues at the hotel, not only offered a delicious and fun menu for Friday evening, but a bowling alley!!!! Three lanes, three teams! Teams consisted of everyone at the meeting including doctors, researchers and families. As one of our attendees stated, “loved the bowling night – gave great opportunity for mixing and mingling”. With great a playlist – we sang a bit, danced a little and bowled a lot!! Regardless of your expertise – it was fun had by all.
“Loved the bowling night – gave great opportunity for mixing and mingling”
We concluded the weekend on Saturday evening with a wonderful dinner at LVI at the hotel. As you can see from the picture – we were a happy bunch! As one attendee said:
“This meeting changed our family’s life.”
As many of the quotes are from our family attendees, a testimony from Dr. Sharma, 2023 Research Grant Recipient clearly states that this was an important weekend for those in the medical field as well.
“For me attending the Myocarditis Foundation conference was not just about learning from experts but also meeting patients and care givers.
It was a profound reminder that empathy and understanding are as crucial as medical knowledge in our journey toward healing and support.”
Thank you to all the families who were able to participate this year and to the doctors, researchers and presenters, thank you for taking the time to be with us.
For those who were not able to attend this year, we hope to see you next year!
