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Texas Children’s Seminar on Pediatric Myocarditis-March 25th 2017

In an effort to expand our mission of education on myocarditis to physicians, the Myocarditis Foundation in conjunction with Texas Children’s Hospital will be holding a one-day seminar on Saturday, March 25th, 2017 at Texas Children’s Hospital. The seminar will focus on the clinical presentation, diagnosis and treatment of acute myocarditis. The program includes presentations from leading experts in the field including the renowned Dr. Jeffrey Towbin and Dr. Jack Price. Continuing education hours will be provided to physicians and nurses who attend.

There is limited seating, so early registration is requested. Please contact Gen at the Myocarditis Foundation (281) 713-2962, to reserve your seat with a $50.00 registration fee.

Posted by Myocarditis Foundation in Uncategorized.

Myocarditis Awareness Shared with Students at Northeastern University in Boston, Massachusetts

The National Organization of Rare Disorders (NORD), a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them, such as the Myocarditis Foundation, has developed a Speakers Bureau Data Base. The Speakers Bureau, is a resource for teachers, college and medical school professors, student groups and community members who are seeking speakers to talk about rare diseases in the classroom or at community events. NORD wants to facilitate opportunities for patients and caregivers to share stories about their journey to diagnosis and search for treatment, especially for students preparing for healthcare careers. NORD hopes that the patient voice will raise awareness of rare diseases and promote earlier diagnosis for patients, many of whom go without accurate diagnosis.

Posted by Myocarditis Foundation in Uncategorized.

4th Annual Family Support Meeting, September 16-17, Orlando Florida… Deadline for room block reservation has arrived

Deadline for room block reservation has arrived…

If you have not done so, please make your reservation by July 15th!

Please remember to call and make your room reservations to:

(407) 586-0000 or (877) 350-3236

Please Only mention the Myocarditis Foundation Room Block

The contracted room rate is $215.00, plus $20.00 Resort Fee, plus Taxes.

We are all set for the meeting and are looking forward to seeing our families who have attended before and looking forward to those of you who we have not yet met!

The venue is beautiful and the weekend will prove to be the best ever!

Posted by Myocarditis Foundation in Uncategorized.

Latest Study on Sudden Cardiac Death among Children and Young Adults

Dr. Leslie Cooper has shared this Abstract that was recently published in the New England Journal of Medicine June 23, 2016. See the highlights below and read the whole abstract below.

As many of you have so sadly realized, sudden cardiac death among children and young adults is a devastating event. A study on 490 cases of sudden cardiac death among children and young adults ages 1 to 35 years-of-age was conducted in Australia and New Zealand from 2010 through 2012.

Unexplained sudden cardiac death was the predominant finding among persons in all age groups, except for those 31 to 35 years of age, for whom coronary artery disease was the most common finding.

Posted by Myocarditis Foundation in Uncategorized.

4th Annual Family Support Meeting, September 16-17, Orlando Florid

We are all set for the meeting and are looking forward to seeing our families who have attended before and looking forward to those of you who we have not yet met!

The venue is beautiful and the weekend will prove to be the best ever!

Friday Dinner, as well as Saturday Breakfast, Lunch, and Dinner are included.

All you need to do to register is send a check for $100.00 per person to:

The Myocarditis Foundation

3518 Echo Mountain Drive

Kingwood, Texas 77345

If you prefer to use a charge card, we are asking that you pay the fees so that the cost of the Registration is $105.00 per person for credit card (either via PayPal or call to me at the Myocarditis Foundation (281) 713-2962.)

Please remember to call and make your room reservations to:

(407) 586-0000  or  (877) 350-3236 

Please Only mention the Myocarditis Foundation Room Block

The contracted room rate is $215.00, plus $20.00 Resort Fee, plus Taxes.

Posted by Myocarditis Foundation in Uncategorized.

Rare Disease Week 2016

This week I had the pleasure of participating in Rare Disease Week in Washington, D.C., which was organized by the Rare Disease Legislative Advocates (RDLA). It is the 5th year that they have organized this on Capital Hill through The EveryLife Foundation for Rare Diseases, (a 501c3 public charity, that is both a public policy organization as well as a patient centered organization). The RDLA is designed to be a clearinghouse and advocacy center for the rare disease community.

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During this week, the series of events were designed to empower patients and their advocates. Leaders from the National Institutes of Health (NIH) and National Organization of Rare Diseases (NORD) joined the representatives from the Every Life Foundation and the RDLA to educate over 330 patient advocates, who were in attendance, on how to get the word out to our legislative officials on the bills in Congress that can positively impact the rare disease community.

Posted by Myocarditis Foundation in Uncategorized.

It’s not to late for # Giving Tuesday

First and foremost, we want to thank all those who checked us off their Holiday Giving List yesterday by making a donation to the Myocarditis Foundation.

Your generosity has helped us become who we are today and for all those we have been able to help in our 10 years of supporting those affected by Myocarditis.

 It’s not too late to make a difference …

In case you missed it, if you did not have a chance to make your donation yesterday on # Giving Tuesday, please do so today…

The Myocarditis Foundation depends on so many generous donors like yourself to help those affected by Myocarditis.

Posted by Myocarditis Foundation in Uncategorized.

Wrapping Up # Giving Tuesday

Before you settle into your “Prime Time” evening, have you taken a few minutes to make a huge difference by making a Donation to the Myocarditis Foundation ?

 If not, please help us make a difference to so many by donating now to The Myocarditis Foundation…

 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. You can get points for other purchases that way!

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Posted by Myocarditis Foundation in Uncategorized.

It’s lunchtime…have you made your donation to the Myocarditis Foundation yet for # Giving Tuesday ?

It’s lunchtime…have you made your donation to the Myocarditis Foundation yet for # Giving Tuesday ?

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. You can get points for other purchases that way!

 

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Posted by Myocarditis Foundation in Uncategorized.

Cyber Monday

On this, Cyber Monday, the day before #Giving Tuesday December 1st, we want to ask you to remember us in your Holiday Giving. So much is spent on purchases for giving during this holiday season of giving.

Please remember to donate to the Myocarditis Foundation so that we can continue our mission of helping others and put an end to this devastating disease as we know it.

Please join these donors in lining up to be the first to give to the Myocarditis Foundation on # Giving Tuesday, December 1st. Your donation to the Myocarditis Foundation can make a huge difference in our ability to continue our mission.

Posted by Myocarditis Foundation in Uncategorized.