I’m a big fan of questions. All my life, I’ve asked questions and looked for the answers. Sometimes I’ve found them, and sometimes not. What I now realize, after many…
Let's talk about Mount Everest. It sits on the border between Nepal and China and its peak is 29,029 feet above sea level--which makes it the highest mountain on earth.…
Every spring, as the weather warms up, millions of Americans strap on their hiking boots, pack their tents, and head out into the woods for a weekend of fun and…
This year, there were about 5,000 runners in the Myrtle Beach Marathon. Trigeminal neuralgia (TN) didn't stop Greenville, North Carolina’s Melvin Coleman from being among those who ran relay races,…
Leah Alstin has a rare disease called Friedreich’s ataxia. Friedreich’s ataxia is a disease that progressively damages and affects the nervous system. Poor coordination is one of the early symptoms…
Positive Thoughts Kim Frederickson was diagnosed with pulmonary fibrosis (PF) in 2014. She has used her skills as an author to share her story. Her motto is to focus on…
Sam Edwards was always exhausted. No matter how many hours of sleep he would get, he just could not stay awake. But as a professional race car driver, he needed…
Inspiration comes from many different places, but the best inspiration usually comes from seeing someone achieve greatness in the face of obstacles. That is exactly what a Navy midshipman by the…
Admittedly, I’m no expert when it comes to sickle cell disease, but after reading about an inspirational young woman who is forging on to live—and I mean LIVE—her life, I’d like…
About 1 in 3,000 babies are born with gastroschisis every year. Elliotte Sargent was born in September 2016 and is one of those babies. While in the womb, she was…
Many of us, especially men, define ourselves by the job we have. Don’t believe me? Ask a guy who he is. He will almost certainly answer with his job title.…
The coaches noticed teenager Amaris Tyynismaa during a 5K race as she ran past some of best distance runners in the South. They admired her long strides as she ran faster than…
Kiara Trussell thought her dreams of being a cheerleader would never happen. This is partly because Friedreich’s ataxia has made her wheelchair bound. Friedreich’s ataxia is a progressive neurological condition.…
Tamara is a wife, mother of two, personal trainer, yoga instructor, nutrition coach, and a blogger. Furthermore, she shares her story about having Guillain–Barré Syndrome. When Tamara received her Guillain–Barré Syndrome…
Twenty-three teenagers living with rare diseases worked the runway at a recent fashion show in Texas. Sixteen-year-old Maggie, living with Von Willebrand disease, was one of the models for the…
Storytelling holds immense power and, thus, is one of the best ways to raise awareness of rare diseases. Hanna Smith has a career as a journalist. Over the years, she has interviewed people…
Think back: Remember those halcyon days of 2014 when we spent the summer dumping buckets of ice water over our heads and challenging our friends to do it or pay…
The word “marathon” has become so ubiquitous that it is almost cliché. When people hear the word, they think of their favorite reality TV show played for 12 consecutive hours…
Eryn Gaffney, now 20, was diagnosed with Tourette syndrome at the age of nine. Tourette syndrome occurs as a result of the basal ganglia misfiring. This is the part of…
High school senior, Mary Lacy Lusk has ankylosing spondylitis (AS). For those who might not know, ankylosing spondylitis is a rare autoimmune disorder that is similar to rheumatoid arthritis. Mary states…
Whenever I couldn’t perform to the best of my ability or follow through with a project, I would typically come down very hard on myself. One thing I am trying…
There is no way to prepare yourself to hear that your child has an incurable rare disease. After the initial shock of learning that their child will most likely die…
Bethany Barber is a Virginia native living with sickle cell anemia who has dreams of making it big as a model. She goes on daily castings, as modeling is her main…
About four years ago, Sagar Baheti found out he had an eye condition called Stargardt disease. Initially, he was not alarmed by the small symptoms that indicated Stargardt. He did…
Two years ago, Lucas wouldn't go anywhere near water. Last month, he tackled a swimming challenge, and he did so in support of a cause that's close to home. Lucas…
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