Written by Jennifer Huron on May 16, 2015
When Lori Sames’ daughter, Hannah, was diagnosed with Giant Axonal Neuropathy (GAN), a rare disease that results in progressive nerve death, she could find only one scientist in the world studying it. She knew that if they could ever hope to help Hannah or another GAN patient, she needed to… Read More
Written by Jennifer Huron on May 14, 2015
Yusuf Patel is a 12-year-old rare disease patient and advocate who is helping to save the lives of other children.
His journey began at 9 months old, on a flight home from India visiting grandparents. Yusef experienced a medical crisis that caused the plane to make an emergency landing in Turkey. … Read More
Written by Jennifer Huron on May 6, 2015
In a race against time, Glenn and Cara O’Neill have quarantined their family for nearly one year to try and save their daughter, Eliza.
Eliza, 5, has Sanfilippo Syndrome, a rare degenerative disease characterized by the body’s inability to break down complex carbohydrates, resulting in a build-up of cellular waste in… Read More
Written by Jennifer Huron on May 5, 2015
Savannah Hollis, a healthy three-sport athlete who had just turned 21, was one week into her senior year at the University of Louisiana at Lafayette when a sudden internal bleeding episode nearly killed her and left her severely paralyzed on her right side.
Her symptoms came on with dizziness, which she… Read More
Written by Jennifer Huron on May 2, 2015
At the age of 15, Sophia Hanson was attending boarding school in Chicago at Lake Forest Academy. She loved running for the cross-country team, where she would run up to six miles a day and compete on a regular basis, pushing her body to extraordinary limits.
Now at 18 years old,… Read More