Clinical trial facilitators waste so much time that could be spent on research, trying to find patients to participate in their studies. We all know time is valuable, especially in…
I felt the cold sweat racing down my back. I felt like I was drowning, but there was no water around. By this point in my life, I had experienced…
The Cystinosis Research Network (CRN) is a non-profit dedicated to supporting individuals and families affected by cystinosis. They are strong advocates for research who simultaneously focus on improving the lives…
Guillain-Barre syndrome (GBS) occurs when the body's immune system attacks the peripheral nerves, damaging the myelin insulation. Muscle weakness in the arms and legs are often the first signs of…
Who would think that missing a small amount of genetic information from one chromosome could alter someone’s life, and the life of their loved ones, so dramatically? For many parents,…
Cerebral palsy (CP) is caused by brain lesions that are non-progressive, meaning the lesions don't cause the brain to further deteriorate. It causes impairment of motor function—the ability to control motion…
Parkinson’s disease can effect each individual differently. Robin Morgan PhD, seeks to determine the main differences between woman and men experiencing Parkinson’s. Based on her studies, she states that women with Parkinson's…
She was given 15 months if she didn't take action. Heather Von St. James was in the prime of her life. She was the co-owner of a salon/spa where she…
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…
On May 12th, 2017 the University of Rochester Medical Center hosted the first Technology and Rare Neurological Diseases Symposium (TRNDS). It successfully brought together patients, researchers, leaders in health technologies,…
I recently read an article that was focused on amyotrophic lateral sclerosis (ALS) and how cases of this degenerative motor-neuron disease are expected to increase as the world population ages.…
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…
Need to get your inspiration fix for sickle cell anemia (SCA)? Look no further! A short and simple video is a click away a la the National Institutes of Health…
Inspiration can be found in almost anything. Frequently, it’s a famous person from history who has overcome adversity to achieve some amazing feat. Sometimes it’s the busy person who finds…
It doesn’t seem possible to have a conversation these days without it devolving into some sort of partisan shouting match will little hope of resolution. Issues that we might think…
Lately, I've been thinking the three B’s of burgers, beaches, and cold beverages—my to-do list at the start of warmer weather. Along with outdoor fun, though, health and science experts…
I’ve had one hellofa tough day, but stopped abruptly with an attitude shift to feel inspired after reading an uplifting article which I know will inspire tons of moms in…
Welcome back to Editor's Choice! May is Lyme Disease Awareness Month, and to bring you awareness we have a 7-minute documentary you won't want to miss! We also have some…
All I can say is: "No $%@#, Sherlock" when I read articles like some of the ones I’ve read recently about the status of hemophilia A and hemophilia B treatments.…
Most of us know that not having enough iron in the blood results in disorders like anemia, fatigue, low energy… I first became aware of “iron-poor blood,” or anemia, when…
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…
The 2017 Suburban Chevrolet Ann Arbor Goddess 5K and Mile Fun Run will be held on Mother’s Day, this Sunday, May 14th. The race is not only to celebrate women,…
Some people can manage tuberous sclerosis complex (TSC) with their doctors for years using a watch-and-wait approach until the last and best option—surgery—becomes necessity. By using the watch-and-wait method, a…
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