The National Institute of Neurological Disorders and Stroke states Guillain-Barre syndrome (GBS) affects 1 in 100,000 people. Let that sink in. 1 in 100,000 equates to 0.001%. Compare that to the…
About 1 in 10,000 people are affected by hereditary angioedema (HAE)--and most don't have a clue that the condition even exists. HAE can be fatal, if not treated. Almost every family…
Moms: The ultimate multitaskers. Whether they're stay-at-home moms or working mom, these strong ladies have a way of getting stuff done, come hell or high water - or a chronic…
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…
We learn the difference between cause and effect at an early age. Before we have the words to express an idea, we learn that when our bellies hurt, we cry…
Here in the United States, we tend to put doctors on a pedestal. So much so, many of us experience a rise in blood pressure in the office. There’s even a…
What does it take to change a person’s mind? Is it something as simple as showing evidence? Will it be convincing only from a certain source? Do people only change…
Everything has a purpose. At least, that’s what my mom taught me. But, you know that wonderful feeling you get when you realize that something can be used for more…
Your child’s health care is important. Finding the right care is not always easy, especially when it comes to finding tuberous sclerosis complex care. Tuberous sclerosis complex (TSC) is a…
Katie and Nataleigh have been best friends since the age of three. Last July, a difficult diagnosis would bring these close friends even closer. In July, Nataleigh had a son, Laigan.…
1) Know that your feelings are normal and its okay to be feeling them. It’s totally okay to be apprehensive, nervous, or even terrified. It’s a scary thing you’re going…
Evidation Health’s goal is to make it easier for you to share your symptoms with the professionals who most need to know. Their program, in partnership with others, enables patients…
It’s always exciting when the Food and Drug Administration (FDA) gives a new drug its approval, especially for rare diseases like tuberous sclerosis complex (TSC). This is the culmination of…
The Association of Sickle Cell, Lower Chattahoochee Region (ASCLCR) is an organization dedicated to funding sickle cell research and aiding all those affected by the disease within the eight counties…
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…
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…
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.…
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