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December 23, 2014

TOPIC: Featured News, Patients & Members, Research, Advocacy, Patient Stories

Multiple Endocrine Neoplasia Type 1: One Family’s Fight

Posted at December 12, 2014 06:02 am by admin

Vanessa Devore’s father, Octavio Armenta was never diagnosed, and neither was her grandfather. Hailing from Guadalajara, Mexico, she represents a legacy of fighters against an unknown disease, as the pioneer in her family who received the first diagnosis.

Eleven years ago, Vanessa moved to Chicago, Illinois. While pregnant with twins, she began to experience some unusual symptoms. “I started to feel weird,”… Read More

December 23, 2014

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

Taking Action for ACD

Posted at December 12, 2014 05:54 am by admin

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 I were alone in our room taking turns holding our baby and marveling at how he could… Read More

September 2, 2014

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

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

Posted at September 9, 2014 06:12 am by admin

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