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October 7, 2014

TOPIC: Advocacy, Featured News, Medical, Patients & Members, Research

Taking Action for ACD

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On February 20th, 2013, Eliza and John Rista of Huntersville, North Carolina were blessed with an uncomplicated pregnancy, and a healthy, full-term baby boy weighing 8 pounds and 6 ounces. “Around midnight on the day of my son’s birth, my husband and… Read More

September 16, 2014

TOPIC: Advocacy, Featured News, Industry, Medical, Patients & Members, Research

Living with Blood Cancer

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Editor’s note: The following blog is being published to highlight Blood Cancer Awareness Month and MPN Awareness Day.  

I was diagnosed with essential thrombocythemia (ET) at age 16 after collapsing in my high school cafeteria. At that time, lab results showed I had a platelet count of over 1 million and my world was forever changed. During the last… Read More

September 2, 2014

TOPIC: Advocacy, Featured News, Industry, Medical, Patient Stories, Patients & Members

Children’s Cardiomyopathy Awareness Month Urges Families to #KnowYourHeart this September

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Carmina Taylor of Penllyn, Penn., lost her son, Dorien, to sudden cardiac arrest at age 17. A gifted basketball player, Dorien had no warning signs of an underlying heart condition. Upon autopsy, Dorien was diagnosed with cardiomyopathy, an incurable and potentially life-threatening disease that affects how the heart muscle pumps blood through the body.

Dorien’s tragic death highlights a growing… Read More

August 18, 2014

TOPIC: Featured News, Medical, Patients & Members, Research

The Will to Live and the Strength for a Cure

Posted by Lisa Sencen

The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened muscles could not function normally which affected his ability to breathe on his own. Miraculously, Joshua survived,… Read More