We at the Myocarditis Foundation hope that you and your family have a very Happy Thanksgiving with family and friends.
As the day after Thanksgiving starts the Christmas and Holiday Season of giving, we hope that you can find it in your hearts to donate to the Myocarditis Foundation on this # Giving Tuesday, December 1st .
We are only able to continue our mission of education, myocarditis specific research and emotional support of those affected by myocarditis, because of people like yourself.
Please go onto our website, www.myocarditisfoundation.org and download a donation form which you can mail in, or simply hit the DONATE button and donate via PayPal with your credit card.
# Giving Tuesday was started in 2012 to create a global day of giving back that celebrates generosity and kindness.
In the way that Black Friday, Small Business Shopping Saturday, and Cyber Monday kick off the buying season, #Giving Tuesday, December 1st, kicks off the GIVING SEASON.
It is a day to step back from the commercialization and consumerism that comes with the holiday season, and promote doing good for others.
The Myocarditis Foundation is participating in # Giving Tuesday and hope to raise funds to help us help others.
Please consider making a donation to the Myocarditis Foundation to help us promote the good that we do to help those affected by Myocarditis and to stop future suffering of those by it.
In light of the upcoming Holiday Season and well wishes that are sent via greeting cards, please consider sending out Tribute Cards for your Holiday Cards…
There are companies where you can purchase “Holiday Stickers” on line to personalize your cards…every $5.00 card gives a $4.00 donation to the MF!
Your stickers arrive within days of ordering them and are easy to really personalize your greeting cards.
Your Holiday Card recipients will feel grateful that you thought about making a donation in their name in addition to your sending them Holiday Wishes. Those Holiday Greeting Cards will now take on a whole new meaning of “Giving.”
Please contact Diane Aranson at firstname.lastname@example.org to place your order.
This past Thursday night, the Houston community of Kingwood was introduced to the Myocarditis Foundation at their first Myocarditis Foundation awareness event. Displays of our “Not a Blank Canvas Awareness Posters” were read by the attendees who were deeply moved by the impact that myocarditis had left on the small sampling of its victims.
Genevieve Rumore, our Executive Director, hosted the event and shared that we do not know the true global burden of myocarditis since so many cases are either misdiagnosed or undiagnosed, and can often be found on autopsy after a sudden death.
She did report that what we do know is that the incidence of myocarditis increases at puberty; it is more than twice as likely to occur in boys than girls; the most common cause of myocarditis is viruses, with the most common one being the coxsackie virus; myocarditis is a large cause of sudden death in children and young adults, and that the prognosis is good if the disease is caught early.
During the 2015 Family Support Meeting several prominent physicians specializing or studying myocarditis gave presentations to the attendees to help them understand myocarditis and the advances in diagnostics and treatment over the years. The speakers include Dr. Leslie Cooper, Dr. Jack Price, Dr. Colan, Dr. McNamara and Dr. Bode. See some key points each speaker made in this blog post.
Dr. Cooper is Chief of Cardiology at Mayo Clinic in Jacksonville, Florida. He is the world’s leading expert in myocarditis and Co-Founder and Board Member of the Myocarditis Foundation.
- The purpose of Dr. Cooper’s talk was to give the attendees hope on where we have been and where we are today as the Myocarditis Foundation
- In 1837, “Myokarditis” was first termed in Germany as inflammatory heart muscle disease secondary to heart muscle cells being destroyed
- Over the next 100 years very little was said about myocarditis, though it was associated with rheumatic fever and syphilis around World War I
- The proportion of heart failure caused my myocarditis peaks at < 1 month of age, drops down but resurges again at puberty.
The 3rd Annual Myocarditis Foundation Family Support Meeting took place September 25-26, 2015 in National Harbor, Maryland. In addition to talks by highly regarded cardiologists, researchers in myocarditis, and family members, two members of the Washington DC Chapter of Compassionate Friends, were key speakers in the support of our families.
Dr. Coralease Ruff, PhD and Dr. Kimberly Battle, PhD explained Compassionate Friends is an International Support Group by peers of bereaved parents and siblings. It started in England in the late 1960’s and came to America in the 70’s. In their talk they stressed that grief has no time frame.
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.