Candace Moose, Giant Cell Myocarditis survivor due to a heart transplant and co-founder of the Myocarditis Foundation, wrote a beautiful and eloquent book tracking her experience of her heart transplant. Candace’s book, The Grateful Heart highlights the ups and downs of the journey of heart transplantation as well as how she addressed the big questions that come with a rare disease that leads from a near-death experience to the transplantation of a new heart. It is a beautiful read, one that can speak to anyone about the power of positive thought, close friends and family, and an amazing staff of medical professionals.
Written by: Hamish Deery
October 11, 2014: Kona, Hawaii
The alarm went off at 4:15 am but I was already awake. The rest of the family was bleary eyed but also up and ready for the long day head. We ambled the 2km from our rental condo town to transition. The tension was palpable race morning as the 2,200 athletes were body-marked with race numbers and made final arrangements in transition with their bikes, pumping tires and filling drink bottles. I felt pretty calm, the overwhelming feelings were anticipation mixed with some apprehension and nerves.
They ushered the male age groupers into the water about 6:40 am, and as we dreaded water at the start line waiting for the cannon to go at 6:50 am.
The Myocarditis Foundation is announcing the launch of their Tribute Cards! 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 a Myocarditis Tribute Card for your next significant holiday or occasion. Minimum Donations begin at $5.00 and are tax deductible. Please follow these simple steps to send a Tribute Card:
1. Please call or email Diane Aranson at 561-213-2775 or DiJoPolo@aol.com with:
• Your name
• Your address
• Person and/or occasion you will be honoring
• Donation amount
The Myocarditis Foundation is honored to announce a new partnership with the senior care company, CareOne. CareOne gave the Myocarditis Foundation a generous donation and became a sponsor of this year’s Myocarditis Foundation’s Annual Golf Tournament. It is because of CareOne’s generous donation and sponsorship that this year’s golf tournament is looking to be one of the most profitable in the Myocarditis Foundation’s history, allowing for the Myocarditis Foundation to continue in its mission of saving lives from the heart disease myocarditis.
With services that include post-hospital care, rehabilitation, assisted living, long- term care and a variety of clinical specialty programs, CareOne offers compassionate care in gracious, professionally managed centers and communities.
The Myocarditis Foundation actively supports international outreach to help educate physicians and the public about this deadly disease. In 2014 Dr. Cooper spoke or will speak on myocarditis at the Asia Pacific Heart Failure Society in Indonesia, the Indonesian Cardiovascular Society, the Samsung Medical Center in Seoul South Korea, the World Heart Federation Meeting in Melbourne Australia, and the European Society of Cardiology’s Myocardial and Pericardial Working Group meeting at the Dead Sea Israel. Dr. DeLisa Fairweather spoke on myocarditis at a scientific meeting in Berlin Germany. She also performed collaborative research in Seoul South Korea, Berlin Germany, and Marburg Germany.
I know there are some of you out there that would love to do something in the line of fundraising for Myocarditis, but you just don’t know how to go about it. It really isn’t all that hard to do. It can be anything from a donation jar in a convenience to a full blown event for an entire day. I know, we’ve done them both. Just pick something and run with it. Some ideas you could try, car wash, poker run, walk/run, host an event, ask the victim’s/survivor’s place of employment to host a barbecue for their employees and donate the proceeds, if it’s a child contact the school, maybe you could do something at an athletic event.
In just the past few months we have heard of several different middle and high schools from all across the US who have held myocarditis awareness events and fundraisers to honor individuals in their communities who have passed away due to myocarditis.
In Denver, Colorado students at Smokey Hill High School gave a presentation about the disease and a young girl in the community who passed away due to myocarditis. The students also bought baked goods and ended up donating $25 to the Myocarditis Foundation. It was an excellent way to bring awareness to a disease that often affects young, healthy individuals! Thank you Smokey Hill High School students!
June 7th-8th, 2014 in Point Pleasant, NJ
The Myocarditis Foundation was honored to be able to hold its Annual Patient and Family Support Meeting for the second year in a row. This meeting has proved to be invaluable to the patients and families affected by myocarditis, as the Myocarditis Foundation provides the opportunity for these individuals to come and meet several myocarditis experts, learn about the newest research, and meet others who know all to well the exact difficulties and pain this disease can bring to patients and their families.
2014 Family Meeting Attendees
This year’s meeting kicked-off with a sunset cruise down the Manasquan river where families were able to interact with each other and members of the Myocarditis Foundation’s Board of Directors, share their experiences, and ask questions in a casual atmosphere. The highlight of the evening was a memorial service for all of those who had lost someone to myocarditis. Each family received a butterfly and when their name was called they came up, announced the name of their loved one, and then released their butterfly. It was a moving experience and was a perfect way to honor the many lives myocarditis has taken.
The Myocarditis Foundation would like to extend a large Thank You to Boston Scientific who awarded the Myocarditis Foundation a grant of $3,000 to cover the costs associated with the Myocarditis Foundation’s 2014 Patient & Family Support Meeting. The Myocarditis Foundation is honored to be working with Boston Scientific, an organization dedicated to advancing patient care and saving lives, especially in the area of Heart Failure.
The 2014 Patient & Family Support meeting was a huge success and it is because of the generous support from Boston Scientific that we were able to extend our services to the patients and families affected by the heart disease myocarditis.
The 2nd Annual Myocarditis Foundation’s Patient and Family Support Meeting will be held this weekend, June 7th-8th in Point Pleasant, NJ. We know not all of you will be able to be in attendance, but we still want to share our Schedule of Events, so everyone knows what kind of talks the Myocarditis Foundation will be providing. All talks will be available on our website following the meeting. Click here to see last year’s talks at the Family meeting in Orlando, FL.
For those of you in attending our meeting, please view our letter highlighting important meeting details and also download the map for directions from the hotel to the dock of the dinner cruise (Saturday evening event).