Family Support Meeting Brought Families Affected by Myocarditis Together

The 6th Annual Myocarditis Foundation Family Support Meeting was held at the Warwick Hotel in New York City June 22nd and 23rd, 2018. Survivors, doctors, researchers and families of those affected by myocarditis were in attendance for the event. This year our newest Board Member and “Family Liaison”, Giustina Schiano, helped in the planning of the weekend keeping each family in mind. We started the weekend with a welcome dinner at a restaurant called Bar Boulud, where we enjoyed a private dining room, amazing food and wonderful company. Anyone looking in on this dinner would describe what they saw as a “Family Reunion.” The Myocarditis Foundation is a family, into which the newcomers were all welcomed as if we had all known each other for a long time.

The following day we started bright and early at the Warwick Hotel with a delicious breakfast. Christopher Corso, Vice-President of the Foundation, welcomed the group and introduced those responsible for the planning of the weekend, the board members, physicians and researchers in attendance.

Candace Moose, Co-Founder and Secretary of the Myocarditis Foundation, shared her story starting from her battle with Giant Cell Myocarditis, her desire to give back by helping others with the disease, to the start of the Myocarditis Foundation.

A surprise guest, Dr. Leslie Cooper, called via FaceTime from India to say hello to all in attendance and said that he wished he was able to attend but was overseas speaking to cardiologists from all over the world about myocarditis.

Next, Dr. DeLisa Fairweather, Medical Advisory Board Member and myocarditis researcher, gave a wonderful layman’s talk about what myocarditis is and answered questions on the disease.

Board member, Dr. Doug Luffborough, organized an icebreaker that allowed everyone to introduce themselves and share how myocarditis is a part of their lives.

Genevieve Rumore, Executive Director for the Foundation, then gave an update about the educational/medical awareness efforts that have been initiated over the last year and introduced our newest fellowship grant recipient, Dr. Paul Hanson, PhD, who spoke about his work studying myocarditis.

After Dr. Hanson shared his exciting progress on myocarditis research, a panel of experts including MF Medical Advisory Board Member, Dr. DeLisa Fairweather, PhD; MF Board of Directors, Pediatric Cardiologist, and Pediatric Biobank Lead Investigator, Dr. Jack Price, MD; Adult Cardiologist and Adult Biobank Lead Investigator, Dr. Mario Deng, MD; and Executive Director, Genevieve Rumore, RN, BSN was organized to answer any questions posed by the group.

After a delicious lunch, Foundation President Joseph Rumore, gave an update on the Foundation status and future goals.

Finally Linda Curtis, LMSW lead a Soul Collage Workshop that was healing and therapeutic for those involved. Giustina Schiano made the closing remarks.

A farewell dinner was held at Mozzarella y Vino, and at the end of the dinner no one wanted to leave; they were all already making plans for next year’s Family Support Meeting.

We would like to thank each survivor and family member for making this year’s Family Support Meeting a success and want each of you to know we are here if you need anything at all between now and then.

 

Speakers, Physicians, Researchers

Dr. Jack Price, MD
Associate Professor of Pediatrics, Baylor College of Medicine
Associate Director of the Heart Failure ICU at Texas Children’s Hospita
Principle Investigator of the Pediatric Biobank
Myocarditis Foundation Board of Director

Dr. Mario Deng, MD FACC FESC
Professor of Medicine, David Geffen School of Medicine at UCLA
Advanced Heart Failure/Mechanical Support/Heart Transplant
Ronald Reagan UCLA Medical Center
Principle Investigator of the Adult Biobank

Dr. DeLisa Fairweather, PhD
Associate Professor of Medicine, Mayo Clinic
Director of Translational Research
Dept. of Cardiovascular Medicine at Mayo Clinic, Jacksonville, Florida

Dr. Paul Hanson, PhD
Myocarditis Researcher
University of British Columbia
Vancouver, British Columbia, Canada
2017 Myocarditis Foundation Fellowship Research Grant Recipient

Dr. Doug Luffburrough, III, PhD
A Heart Inspired Speaker, Author, and Education Client Partner with Franklin Covey Education “Dr. Luff” holds a PhD in Leadership Studies with a concentration in organizational leadership and counseling.

Linda A. Curtis, LMSW
New York State Licensed Social Worker; Facilitator of the Soul Collage Workshop we will be participating in with the assistance of Rebecca Sarah Venezia, Digital arts & Design Graphic Artist.

Genevieve Rumore, RN, BSN
Executive Director Myocarditis Foundation
A Registered Nurse with extensive background in Cardiac and Emergency Room Care, Administration (as a Chief Nursing Officer and Staff Development for a Long Term Care Facility), a State Surveyor (ensuring that Federal and State Regulations were being upheld), and a Certified Legal Nurse Consultant.