The 2015 Myocarditis Foundation 3rd Annual Family Support Meeting was held this past weekend, September 25 & 26th in National Harbor, MD at the Gaylord Resort and Convention Center. The purpose of this event is to support and bring together families whose lives have been affected by myocarditis. This year’s meeting was attended by over 75 people, including families of victims, survivors, researchers, doctors and Myocarditis Foundation board members. Past meetings have been held in Point Pleasant, NJ and Orlando, FL.
The meeting started Friday evening with an opening dinner in which everyone was able to talk in a casual setting to others in attendance, tell their story and get to know one another.
Opening of Nation’s First Pediatric Heart Failure Intensive Care Unit (HF ICU)
As one of the largest programs in the nation, Texas Children’s Hospital, (TCH) in Houston, is leading the way for positive outcomes in pediatric patients with Heart Failure.
Each year, their dedicated team cares for more than 650 cardiomyopathy and heart failure patients. Myocarditis is a major cause of cardiomyopathy, and the mortality rate in children with Myocarditis is 4.2% in children in the US.
Myocarditis is the 2nd leading cause (25%) of acute heart failure in children, with the 1st leading cause being Idiopathic (unknown cause) Dilated Cardiomyopathy; which in effect, could be caused by Myocarditis, thus increasing the percentage caused by Myocarditis.
The Washington D.C. Chapter of Compassionate Friends will be facilitating workshops at our Family Meeting on Saturday September 26th.
We have heard from many of you that you would like help in dealing with the loss of a child and also with helping siblings handle their loss of a brother or sister. These are very sensitive topics and we have asked for the assistance of Compassionate Friends to help us with them for you at our family meeting. As well, we are asking them to address post traumatic stress, as we all have had experience dealing with that from what ever aspect we have come face to face with it.
The National Organization for Rare Disorders (NORD) is an American non-profit organization aiming to provide support individuals with rare diseases by advocating and funding research, education, and networking among service providers.
Giant cell myocarditis has been listed as a rare disease by NORD for many years but myocarditis in general was not included. The myocarditis Foundation and Dr. Leslie Cooper has recently worked with NORD to have myocarditis included on the rare disease list.
Over the next few weeks in small sections we will be posting the complete report Dr. Cooper provided to NORD about the symptoms, causes, diagnosis and treatment of myocarditis.
June 4, 2015
To all our Families and Friends of the Myocarditis Foundation:
We are asking if you will be coming to our 3rd Family Support Meeting on September 25-27, 2015, which is being held in conjunction with the Heart Failure Society of America (HFSA) and at which time we will celebrate our 10 year anniversary of the Foundation, that you make your decision soon and let us know.
The Foundation is limited with the number of people we can have attend because of the size of the meeting room that the HFSA has allotted us.
More importantly, because there will be thousands of Cardiologists and Researchers in the town at the same time, hotel reservations are going fast.
Our Tribute Cards are given for any reason that one might purchase a greeting card; however, it includes the acknowledgement of a donation made to the Myocarditis Foundation. Tribute Cards can be given for any reason including Memorial Cards, Birthdays, Anniversaries, Graduations, Thank You, Mother’s Day, Father’s Day, or any other Holiday or Occasion.
Please consider sending our Tribute Cards for your next significant holiday or occasion. All donations go towards our continuing research.
Tribute cards can be sent for a minimum donation of $5.00, up to any amount of your choosing, you could help to save another precious life through your gift.
The Myocarditis Foundation is hosting their 3rd Annual Patient, Family and Research Meeting in National Harbor, Maryland, on September 25 and 26, 2015. Our meeting brings together the patients and families that have suffered from the disease, doctors who treat the disease, and researchers who are advancing our understanding of the disease. We expect 100 participants at our meeting.
The Myocarditis Foundation, celebrating its 10 Year Anniversary in 2015, strives to save lives by pursing our mission of educating the public and physicians about the disease, supporting patients and families affected by the disease, and funding research to find answers.
The Myocarditis Foundation is pleased to announce their new Director, Genevieve Rumore, effective immediately. She will assume the day-to-day responsibility for the foundation and can be reached at email@example.com or by calling the office at 281-713-2962.
Gen comes to us with 40 years of nursing and administrative experience.
She has first hand experience in dealing with myocarditis. Her husband Joseph of 38 years, had myocarditis as a young adult. He recovered only to be left with the long- term side effect of cardiomyopathy and heart failure, which led to his heart transplant in 2006.
Gen has made it her life’s goal to help promote awareness of this disease, raise funds for research, and support patients and their families who have gone through dealing with the devastation that this disease causes.
We are excited to announce that the 3rd Annual Patient, Family and Researcher Meeting will be held September 25 & 26th, 2015 in National Harbor, MD near Washington, DC. Please see information about the meeting below, we look forward to seeing each and every one of you.
Michele Cola-Veston, mother of Nino a 21 year old boy who passed away from giant cell myocarditis, was interviewed by the Rare Disease Report about her families story of their battle with myocardits.
The link below contains the Rare Disease Report video interview with Michele Cola-Veston:
Rare Disease Report: Myocarditis- A Mother’s Story