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Doctors, Board Members and Activists

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Myocarditis Foundation

2 weeks ago

Myocarditis Foundation

252 Attendees Celebrate Lee Andrew Hirsch’s Life and Raised Awareness for Myocarditis

On Saturday September 30th at Gargiulo’s Restaurant in Brooklyn, NY, 252 people gathered to celebrate the short life of Lee Andrew Hirsch.

Lee’s life was cut short because of Viral Myocarditis, which attacked him suddenly in November of 2015 and stole his life at age 31, from so many that loved him.

His mother, Giustina Schiano, was devastated by his loss and wanted to raise awareness about the disease and funding for education and research, to stop it from affecting other families as it did hers. In this undertaking, something that she had not ever done before, she relied on the help of others. They helped her prepare such an amazing event that would raise awareness of the disease and work towards the funding for a Myocarditis Fellowship Research Grant in her son’s name.

The overwhelming response and outpouring of love that people showed through their donated time and effort, their donations towards the raffle tables and towards the making of the event such a special event, was beyond amazing. In-Kind donations that cut the costs of the evening and made the donation to the Myocarditis Foundation that much stronger, made for a special event.

Giustina went door to door sharing her son’s story with others on how his life was so suddenly cut short without warning and the need to educate others on the disease so that others would not suffer the loss and devastation that she and her family had.

It was because of her education about the disease to a family friend that prompted him to seek medical care when he started to exhibit viral symptoms that were not getting better. His Viral Myocarditis was diagnosed early and he was able to survive the disease without residual deficits.

It is because of situations like these that will help raise awareness on the ground level about the disease. Because of his sharing of information about the disease to the physicians in the Emergency Room, they now are aware of and will hopefully save another life from Viral Myocarditis in addition to this man’s.

If these 252 people share information about Viral Myocarditis to another 252 people, and so on and so on, we can save many more lives from this devastating disease.

We cannot be fearful of saying the word…Myocarditis…

We cannot be fearful of being wrong and scaring someone about potentially having the disease…

It is so much better to say the word, question it, and have the doctors investigate it, examine the person more closely, and work it up, hopefully to say “no, you do not have that…”, than to have someone not say anything and to find out months later that that is what someone they knew died from…

Raise awareness…raise awareness…raise awareness…

Education is the key to early diagnosis and improved outcomes…

Giustina, we cannot thank you enough for the awareness that you have raised already with your efforts and we know that you will save lives because of it…

God Bless you…we know that Lee is so proud of you as are we at the Myocarditis Foundation…Thank you for all that you are doing for us. ... See MoreSee Less

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Myocarditis Foundation

2 weeks ago

Myocarditis Foundation

The Myocarditis Foundation is pleased to announce that we now have a Myocarditis Community on Inspire.com where our patients, families, and friends can communicate with others who have been affected by the disease.

Users can share personal experiences about symptoms, treatments, emotional support and caregiving. Participants reveal as much or as little personal information as they choose.

If you want to learn more about Inspire click the link on Myocarditis Foundation home page.

Join the Myocarditis Community by clicking the link below. ... See MoreSee Less

Myocarditis Support Group & Community - Inspire

inspire.com

Inspire connects patients, families, friends, caregivers and health professionals for health and wel...

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Myocarditis Foundation

3 weeks ago

Myocarditis Foundation

PLEASE WEAR RED TOMORROW

Tomorrow, Friday September 29th is World Heart Day.

Please wear RED to raise awareness for the day. When people ask you why you are wearing Red, share with them a little about Myocarditis and help raise awareness for it.

Myocarditis is:

•Considered a rare disease but is believed to be more prevalent than previously thought
•Frequently caused by viruses
•Often misdiagnosed as asthma, bronchiolitis, stomach virus, and pneumonia among others
•Affects males more than females
•Affects otherwise healthy, athletic children and young adults
•Is a major cause of sudden death in children and young adults
•Early diagnosis is the key to improved outcomes

Please visit the Myocarditis Foundations Website to learn more…

www.myocarditisfoundation.org ... See MoreSee Less

Myocarditis & Sudden Death Causes, Symptoms, Diagnosis & Treatment

myocarditisfoundation.org

Non-profit Myocarditis Foundation provides information & support related to the causes, symptoms, di...

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Myocarditis Foundation

3 weeks ago

Myocarditis Foundation

Another story in the news of a life taken to soon due to myocarditis and a family raising awareness for the disease.

"The parents of a popular rugby player are aiming to raise the profile of a little-known condition which led to the death of their son.

Tom Parsons, 22, from West Heslerton, died while on holiday with friends on the Greek island of Zante in August 2016.

His parents, Nick and Sue, who set up the Tom Parsons Trust to support the local community, have only recently had confirmation that Tom suffered from myocarditis, which is an inflammation and damage of the heart muscle.

The disease usually affects otherwise healthy people and while there are various causes, it is usually caused by a virus and accounts for thousands of sudden deaths each year."

-The York Press

Read the full story in link below: ... See MoreSee Less

Parents launch heart campaign

yorkpress.co.uk

THE parents of a popular rugby player are aiming to raise the profile of a little-known condition wh...

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Myocarditis Foundation

4 weeks ago

Myocarditis Foundation

“Uncork with Love”

Saturday, September 16th was an amazing evening in Muncie, Indiana at the “Uncork With Love” Myocarditis Awareness Event and Fundraiser conducted by The Honor Stride at the Tonne Winery.

Julie Smith, the Chairperson of the event, was a very close friend of Ashley Burgauer, who passed away on August 29, 2013 of Viral Myocarditis. To keep the memory of her friend alive, Julie started The Honor Stride, which raises funds for the Myocarditis Foundation.

“Uncork the Love” was the 4th annual event to raise funds for the Myocarditis Foundation. Not only did it raise awareness about Myocarditis, it was a relaxing evening with great live music under the stars for those who came out to support us. I’d like to thank them sincerely for their efforts and hard work in making the event a huge success. ... See MoreSee Less

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