Kyndall Sewing
Gene: Unknown

In June of 2019, at 5 years old, we took Kyndall to her pediatrician because she was covered from head to toe in bruises and petechia. Her bloodwork showed critically low platelets and white blood cells so we were immediately sent to Omaha Children’s Hospital. She had a bone marrow biopsy...

Read More

Skylar Grossberg
Gene: TERC

For generations, my family has suffered from illnesses associated with telomeres disorders. Since the rare TERC gene is a recent discovery, the cause of my family’s consistency with terminal illnesses was unknown for a long time. My father was the first to receive a diagnosis of dyskeratosis...

Read More

Remembering Josh Friedman
Gene: DKC1

Josh Friedman was born on June 24, 1994 and passed away on November 18, 2011.  In between he made countless friends, was a Best Buddy at Unionville HS, an actor in multiple productions including his famous role of Tiny Tim in a Christmas Carol, was a camper at Bournelyf Special Camp, played...

Read More

X