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May 1, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honoree, Bailey Gribben

Posted by Jennifer Huron

“The good thing about being diagnosed with Neurofibromatosis is that I can help other people with it,” says Bailey Gribben.

Bailey and his mom remember the days before his diagnosis:  one day on the phone, he casually said he needed put the receiver to his good ear.   This prompted a visit to the doctor, and it was then that they… Read More

April 28, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honoree, Tony Ferrandino

Posted by Jennifer Huron

“I tell my story because it makes people realize how lucky they are in life, and hug their kids a little bit tighter at night.”

These are the courageous words of Tony Ferrandino, who lost his son, Drew, to Batten Disease in September 2014.  He and his wife, Katie, and their sons, Gavin and Drew, had lived a relatively normal… Read More

April 28, 2015

TOPIC: Advocacy

FDA Public Meeting on Chagas Disease Patient-Focused Drug Development

Posted by Jennifer Huron

FDAPaul Melmeyer, NORD’s Assistant Director of Public Policy, attended the FDA’s public meeting on Chagas Disease Patient-Focused Drug Development on April 28.  Chagas is a rare parasitic disease (read NORD’s Rare Disease Report here) that is spread by insects.  While it is quite rare in the U.S., it greatly afflicts… Read More

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