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April 27, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honoree, Laura Crandall

Posted by Jennifer Huron

Laura Crandall was suddenly and unexpectedly confronted with the death of her healthy toddler after a nap.  She has bravely turned her loss into the greatest gain for this rare disorder, which before she emerged on the scene did not have a name.

Laura is at the forefront of advancing awareness and understanding of Sudden Unexplained Death in Childhood (SUDC)…. Read More

April 27, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honoree: Emily Argersinger

Posted by Jennifer Huron

 

At just 13 years old, Emily Argersinger decided to climb the highest peak in the northeast, Mount Washington.  She did this to raise awareness of Sturge-Weber Syndrome – for herself, and for every other patient with this rare disease.

Mt. Washington is famous for its dangerously erratic weather.   Emily had never been on a major hike.  However, once she came… Read More

April 26, 2015

TOPIC: Uncategorized

Get to Know Portraits of Courage Honoree, Devin Alvarez

Posted by Jennifer Huron

Devin Alvarez is a remarkable 18-year-old who has undergone 44 surgeries related to Sprengel Deformity, a rare disease in which the shoulder blade is displaced upward, causing skeletal and muscular deformities and medical complications. 

“My back is full of scars because of all my surgeries.  When I look at myself in… Read More

April 13, 2015

TOPIC: Uncategorized

Announcing the 2015 Portraits of Courage Honorees

Posted by Jennifer Huron

On May 19, on one of the rare disease community’s biggest nights, we will honor the patients, leaders and innovators who are moving the community forward at NORD’s annual Portraits of Courage Gala in Washington, D.C.  More than 500… Read More