Tags Posts tagged with "Community Spotlight"

Community Spotlight

Have you ever just felt so desperate for something that you jump into a decision, without thinking it through completely or weighing the possible...

Spinal muscular atrophy (SMA) occurs when the immune system attacks motor neurons, resulting in the muscles surrounding the spinal cord atrophying (degenerating). SMA is an...

Achondroplasia is one of those illnesses that you can’t hide. And everyone is going to have a different responses to it. Some ignore it, some...

It is every woman's dream. After nine months of waiting, anticipating, dreaming, and expectancy, Jillian Johnson’s first baby was finally in her hands. Her new...

Many sisters may play pranks or bicker with each other often. According to ABC 11 News, Twelve-year-old Natalia and fourteen-year-old Nyasia Yarrell are no different. One...

You're happily tucking your toddler in for her afternoon nap when she starts to panic. Where's her favorite blankie and stuffed penguin? A peaceful nap...

At 5 years old, Holton Jones was diagnosed with ROHHAD, or rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation. According to the Pensacola News...

In collaboration with the Hereditary Neuropathy Foundation (HNF), Patient Worthy held an essay contest for tickets to a Charcot-Marie-Tooth disease event. We asked members of the...

In Toledo, Ohio an 8-year-old child is one of 100,000 Americans who is affected by sickle cell anemia. According to WNDU, Terrilonnae Chatman has sickle cell...

Elizabeth couldn’t speak. She wasn’t expected to ever utter a word. She couldn’t read. She struggled to make trips outside of the house. Certain smells...

Come mid-January, eager and anxious girls flood the roads connecting all of the sororities at my school for recruitment, in perhaps what is the...

I’ll admit that I ran wild as a kid. I never got into trouble—you know what I mean, I was never arrested, no animals were...

Everybody wants to win. Winning gives a certain pride and joy that keeps us wanting more. Winning becomes a motivating factor for a person to...

Once upon a time there were three young brothers, and SPOILER ALERT- this part of the story, unfortunately, does not have a happy ending. Each...

Hey, do you guys remember that Mark Wahlberg movie that came out not long ago? You know, the one where he’s a cop? No no, not...

My freshman year of high school, I began to get strange, red spots on my body. They initially developed on my arms, but within...

Peter Sadler has been raising funds to support the British Lung Foundation, which funds sarcoidosis research. The 42-year-old recently participated in the Bath-Half marathon. He's been on a...

There is a must-read for more inspiration about living with sickle cell anemia (SCA) – a young woman’s blog, but not just any blog. She’s...

“Whoever you are, I have always depended on the kindness of strangers.” Blanche DuBois may as well have delivered this as a tagline for every...

Recently, when another rare mother and I were discussing the many trials that rare disease families face, we agreed that we wished that the...

I recently wrote about an 11-year-old Canadian girl who has an extremely rare disease called rapid-onset obesity with hypoventilation, hypothalmic dysfunction and autonomic dysregulation,...

Alexander Davis is from Tipton, Indiana. He has been living with spinal muscular atrophy (SMA). SMA prevents him from moving much and he is unable to...

Elly Mayday, model, is teaming up with Adam Lawrence, filmmaker, to spread awareness and support for those affected by ovarian cancer. Elly was diagnosed with...

Attitude is one of the most important elements of bringing together “who you are” with “what you do.” Attitude may not be everything, but it’s...

Type 0 is the worse type of spinal muscular atrophy (SMA). Fetuses that have this severe form of SMA typically die within the womb. A...