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Archives for: March 24th, 2016

Living with ALPS

Written by Lisa Sencen on March 24, 2016

When Nicole was six months old, her mother, Laura Roublick, knew something was not right. After Nicole’s first year check-up, her doctors sent them on a long journey filled with hospital visits to find a diagnosis. Fortunately, the NYU Hospital for Cancer and Blood Disorders answered their cries for help. Nicole… Read More

Tougher than an NFL Football Player

Written by Lisa Sencen on March 17, 2016

“That would have been the easy way, but I chose to fight every step of the way!”

Although Brenda Fregger was born with a rare genetic marker called HLA B27, it was not until she was forty years old that this gene was discovered. Since the gene does not… Read More

Running on Air for Rare Disease Day

Written by Lisa Sencen on February 11, 2016

“I want to shake up what people think is possible,” says Mary Kitlowski – “ both people with rare diseases, and people without. If I can make a difference by doing it, it makes it worth it.”

Mary has taken on what for most seems insurmountable – running races… Read More

Living Bella Soul

Written by Lisa Sencen on November 15, 2015

As Shannon tells her story, she starts with “we.” Shannon was born with a twin sister, Lauryn, who at twenty days of age contracted meningitis and was later diagnosed with cerebral palsy. She spent countless hours in the hospital alongside her sister, as she fought against the complications that arise… Read More

Life with CGD

Written by Lisa Sencen on November 5, 2015

In April 2013, the Cooley family welcomed their second child, Sean Ryan. After some problems regarding his weight during the pregnancy, the Cooley’s were thrilled when their healthy baby boy was delivered. At two-and-a-half months old, the Cooley’s were worried that Sean was having stomach issues, but when they saw… Read More